Florida health care regulators have left autistic children from impoverished families at risk of "irreversible" harm by refusing to pay for a critical therapy that can help them lead more normal lives, a Miami federal judge has ruled.
U.S. District Judge Joan Lenard, in an order signed this week, required the state's Medicaid insurance program for needy families to begin paying for a psychological program, called applied behavioral analysis, designed to improve the behavior, language and cognitive development of autistic children. The state already requires commercial carriers to provide the therapy, also called ABA, to Floridians with private insurance — meaning children from poor families were being denied services more affluent children could access.
In a blistering order, Lenard called "outrageous" the state Agency for Health Care Administration's position that behavioral therapy is an experimental treatment that is not widely accepted by experts in the field.
"It is imperative," the judge wrote, "that autistic children in Florida receive (behavioral therapy) immediately to prevent irreversible harm to these children's health and development."
Meagan Dougherty, a spokeswoman for the health care agency, said: "At this time, our team is reviewing the transcripts and the written order."
Although the ruling impacts only Florida at the moment, it could have significant implications for other states, many of whom don't provide coverage for the therapy through their insurance for the poor.
It's the second time since December that the Florida agency has been issued such a stinging rebuke: In December, a Miami-Dade grand jury blasted its regulation of assisted living facilities, saying AHCA had for years refused to crack down on the homes, even after their negligence led to scores of deaths.
The agency declined to tell the Miami Herald how many Florida children could be affected by Lenard's ruling, or how much in additional Medicaid spending the order might engender.
In testimony at the trial, Dr. Elza Vasconcellos, a neurologist who is director of the Autism Clinic at Miami Children's Hospital, said children who receive the intensive psychological therapy often were able to attend mainstream classes with their typically developing peers.
"I see kids who get applied behavior analysis and have money getting better, and kids who don't have money just staying there — and we don't see any progress," Vasconcellos testified. "For me, as a mother and as a doctor, it's really devastating to see that."
The dispute began in February 2011, when the first of three named plaintiffs, the mother of then-3-year-old Karl Garrido, filed suit in Miami district court, arguing the Medicaid program discriminated against Karl by refusing to pay for the treatment. The following July, U.S. Magistrate John J. O'Sullivan wrote a report and recommendation that the state be required to "provide Medicaid coverage for (the boy's) therapy as prescribed by his treating physician."
Legal Services, which represents Karl, added two other children, a 3-year-old and a 5-year-old, as plaintiffs in September.
Autism, typically diagnosed at around age 2, is one of the most common developmental disabilities, afflicting about one in every 110 children, according to the U.S. Centers for Disease Control and Prevention. A neurological disorder, autism often affects a child's ability to speak, learn and interact with others.
Karl, for example, developed typically in infancy. But as a toddler, he became aggressive and antisocial, lost all the vocabulary he already had acquired, and stopped eating solid table food, records show.
Before beginning a program of behavioral analysis, he exhibited "outbursts, extreme aggression, kicking, hitting, throwing objects, hurting himself by banging his head against the wall, biting and scratching himself, poor eye contact, extreme irritability, hyperactivity, incessant screaming, frequent tantrums, and isolating himself from others," according to court records.
But after only one month in the program, the boy showed significant improvements, his mother, Iliana Garrido, testified. The boy began smiling, sleeping better, became less aggressive and more sociable, his mother testified, adding the boy was "learning how to communicate" using words and sentences.
But under the state's Medicaid law, Florida taxpayers will not fund health care that is not "medically necessary." In her ruling, Lenard deemed the state's determination that ABA was not medically necessary "arbitrary, capricious and unreasonable."
Karl's mother said, thanks to behavior analysis, the 6-year-old is now beginning to do many of the little things that other parents take for granted: He can sit still long enough to benefit from his teacher and speech therapist, he can recite his parents' names and his date of birth, and he can control the nagging impulses to strike out against himself and others.
"He's better since getting the therapies," said Garrido, 45, of Miami. "He's playing with other children now, and socializing. Now, he gets to the playground and he says 'Hi' to the other kids and wants to play with them. Before he would just sit by himself or walk in circles by himself."