Already facing sharp criticism over policies that have resulted in the rationing of care to severely disabled children, Florida healthcare regulators are challenging a federal judge's order that the state provide a costly -- but potentially life-changing -- treatment to children with autism.
Last spring, U.S. District Judge Joan Lenard struck down the state's refusal to pay for applied behavior analysis (ABA) for autistic children, calling the state's policy "arbitrary, capricious and unreasonable."
The court case involved three autistic youngsters -- then-5-year-old K.G., 2-year-old I.G. and 4-year-old C.C. -- whose efforts to obtain behavioral therapy had been denied by the state's Medicaid insurance program for needy and disabled people. Lenard ordered that the three children be given the care they sought -- and
that the state provide such care to other autistic children, as well.
The state Agency for Health Care Administration has appealed the order, and, in a pleading submitted in November, argued that the ruling strips the state of its ability to weigh requests for the therapy on a case-by-case basis to ensure the treatments are "medically necessary."
"There is no evidentiary support for the district court's conclusion that [behavior analysis] services are medically necessary for all autistic Medicaid recipients under 21," the brief said. "In fact, the evidence established that ABA treatment is not medically necessary, or even effective, in all cases. Some children do not respond to ABA treatment at all, and, in all other cases, the efficacy of ABA treatment diminishes rapidly after early age."
Autism, typically diagnosed around age 2, is one of the most common developmental disabilities, afflicting about one in 88 children, according to the U.S. Centers for Disease Control and Prevention.
The neurological disorder often affects a child's ability to speak, learn and interact with others.
In her March order, Lenard described as "outrageous" AHCA's position that the behavioral therapy is not widely accepted by experts in the field. Though AHCA had for years refused to pay for the treatment for impoverished families, state law already requires commercial carriers to provide it to Floridians with private insurance -- meaning children from poor families were being denied services to which more-affluent families had access.
Behavioral analysis is designed to improve the behavior, language and cognitive development of autistic children so they can lead more-normal lives.
"It is imperative," the Miami judge wrote, "that autistic children in Florida receive [behavior therapy] immediately to prevent irreversible harm to these children's health and development."
Florida's system of care for disabled and medically fragile children has generated significant controversy in recent months.
In September, the U.S. Justice Department accused the state of systematically cutting in-home nursing care for disabled children, resulting in hundreds of youngsters being warehoused in geriatric nursing homes.
On Monday, about nine state lawmakers will attend a "town hall" meeting in Sunrise to hear from families that have complained that AHCA and a sister department, the Agency for Persons with Disabilities, have so poorly funded services for disabled children that they feel they are being forced to institutionalize their loved ones.
The meeting was organized by newly elected state Rep. Katie Edwards, D-Sunrise, who says she witnessed first-hand the plight of such families while volunteering at a daycare center for children with complex medical needs.
Medicaid serves 3.3 million recipients statewide, with a $21 billion budget..
In its pleading, AHCA argues the judge overstepped her authority by ordering the treatment for all disabled children -- rather than just the three named in the lawsuit. Those three are now receiving behavioral therapy.
"Plaintiffs did not seek class-wide relief, the district court did not certify a class, and the case was not tried as a class action," the state argued.
AHCA's other objection: Because Lenard, in her order, determined that behavioral analysis is medically necessary as a treatment for children with autism -- and not "experimental," as the state had long maintained -- AHCA no longer has discretion to approve the treatment on an individual basis, the state asserts.
Lenard's ruling's "broad and unqualified terms leave AHCA no room to determine medical necessity or to deny coverage where ABA services are medically unnecessary," the state argues.
Critics of the Medicaid program insist such "medical necessity" determinations are used to artificially control the healthcare spigot for needy families -- allowing Medicaid administrators to arbitrarily cut costs by declaring that services are not needed.
In a friend-of-the-court brief, advocates for disabled children accuse AHCA of trying to mount "serial rematches" against other disabled children.
Attorneys for autistic children say that nothing in Lenard's order prevents the state from making medical-necessity determinations. Indeed, the lawyers say, they have already conceded the state retains that power.
"That's a red herring," said Miriam Harmatz, a senior attorney at Florida Legal Services in Miami, which is litigating the case. "Of course they can do that; that's the law."
Lawyers for autistic children also have argued that by refusing to pay for behavior therapy for impoverished children, while requiring private insurers to provide it, the state has institutionalized discrimination against poor families.
Doctors for the children, lawyers wrote in a pleading, "testified to the tragic and discriminatory consequences for their patients who rely on Medicaid. Essentially, their patients with insurance receive ABA [and] get better, while those on Medicaid do not."
One of the three plaintiffs named in the suit, Karl Garrido, appeared to develop typically until he was a toddler. Then, he became aggressive, anti-social, and lost his ability to use words. He also stopped eating solid table food.
Karl, court records showed, exhibited "outbursts [and] extreme aggression" -- kicking, hitting, biting and scratching himself, throwing things and banging his head against the wall. He also became irritable and isolated, frequently throwing tantrums.
The youngster improved, however, after just one month in a behavior analysis program, his mother, Iliana Garrido, testified as part of a four-day trial before the judge.
"I am seeing again the baby that I had, happy and smiling," Garrido testified, "a baby that I lost."
Though the state had insisted behavior therapy was "experimental," agency administrators wrote an email to officials in Georgia shortly before the trial seeking help: "We have been unable to find an expert to testify on our behalf."
The U.S. Centers for Medicare and Medicaid Services, the U.S. Surgeon General, the Centers for Disease Control and Prevention, the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, and the health departments of several other states all have endorsed behavior analysis as an evidence-based treatment for autism.