Living under an 'umbrella of stress that’s unimaginable'
Since turning 3, Marco Tapie has never gone more than a few days without a seizure; savage, sustained, unceasing seizures that sometimes left him bruised and bloodied.
They also left him intellectually disabled, the result of trauma to his developing brain.
Tapie’s mother, Maria Garaitonandia, asked state disability administrators two years ago for help in caring for Tapie, now 23, and too strapping for his mother to control him when his rare form of epilepsy sends him into paroxysms of unintended motion. The Agency for Persons with Disabilities refused, saying the young man failed to meet eligibility for a program that serves disabled Floridians in their homes or communities.
But late last month, a Miami appeals court said the disabilities agency, or APD, cherry-picked diagnostic tests in an effort to avoid caring for Tapie, and ordered the state to enroll him into its community-based care program.
It’s a hollow victory: Tapie will join at least 20,578 Floridians on a wait list for the program. Unless he can convince disability administrators he is in crisis — meaning he is in danger or homeless, or about to become so — he’s likely to wait years before he will receive any help from the state.
Last month, Tapie was among three Floridians with whom state judges or hearing officers sided in disputes over eligibility for services in the state’s disability program. In all three cases, the agency spent thousands of dollars fighting to avoid spending anything on behalf of a Floridian who is disabled. In all three cases, a legal opinion said the agency was wrong to do so.
Statewide, APD will spend $427,334 this budget year in salaries for eight attorneys who fight appeals of disabled people who have been rejected.
“We are a miserly state,” said Paolo Annino, who directs the Florida State University law school’s Children’s Advocacy Clinic, which represented one of the three, a disabled foster child. “There are people on the wait list who will probably die before they receive any actual services. Once you are on the wait list, it’s for a long, long time.”
APD was embroiled in a similar dispute this summer with an autistic man, Arnaldo Rios, who languished for five weeks in a psychiatric hospital after he watched his caregiver get wounded by a North Miami police sniper. Rios’ lawyer says the agency has failed to develop adequate services in South Florida for people with autism who are difficult to manage. Absent any other option, Rios was transferred late last month to a Central Florida facility with a long history of abusing and neglecting its residents — one the state is trying to shut down.
We are a miserly state. There are people on the wait list who will probably die before they receive any actual services. Once you are on the wait list, it’s for a long, long time.
Paolo Annino, who heads the Florida State University law school’s Children’s Advocacy Clinic
Since 2012, the disabilities agency has elevated 6,000 Floridians from its community-based care wait list. The 6,000 brought to 32,958 the number of people in the state who are enrolled, said APD’s director, Barbara Palmer.
Florida near the bottom
Palmer said her agency “will be complying with the courts’ orders to support these three individuals.” She added: “While APD will continue to follow the law, we will also review our eligibility approval process to make sure we are serving Floridians to the highest standards.”
“The Agency for Persons with Disabilities is fully committed to assisting Floridians with developmental disabilities so they can lead healthy, independent lives,” Palmer said. “Each of these cases is unique and undergoes extensive review processes to ensure the agency follows legislative guidelines while using our resources in the most efficient and helpful manner.”
APD’s overall budget is $1.3 billion, and the lion’s share, $1.1 billion, is spent on services for Floridians hoping to avoid more costly institutionalization. In the 2016 budget year, administrators were able to add 2,083 people into the program.
Despite the new enrollments, Florida remains one of the stingiest states in the nation for spending on citizens who are disabled and want to avoid living in institutions. A research project at the University of Colorado called The State of The States in Developmental Disabilities ranks Florida near the bottom for its fiscal effort on behalf of disabled people.
Nevada spent $1.46 per $1,000 of average personal income on community programs for disabled people in 2013 — the most recent year data was available. Florida spent one cent more than Texas, or $1.67 per $1,000 of average personal income. David Braddock, chairman of the cognitive disability program in Colorado’s Department of Psychiatry, said the two states were essentially tied at second-to-last for adjusted community spending.
Two states, New York and Maine, spent more than five times as much as Florida, the University of Colorado reported. The District of Columbia and 15 states — including Indiana, Iowa, Louisiana, Massachusetts, Minnesota, North Dakota, Ohio, Oregon, Pennsylvania, Rhode Island, Vermont, West Virgnia and Wisconsin — spent three times as much as Florida, adjusted for state income.
20,578 Number of people on the wait list for Florida’s community-based care program
“You would expect those with greater wealth to spend more on people with developmental disabilities,” Braddock said. “If they don’t, that should be brought out into the sunshine.”
FSU’s Annino said that while Florida’s spending has remained flat, demand for the program has been increasing. The Centers for Disease Control and Prevention reported in 2007 that one in every 150 children was on the autism spectrum. By 2014, the number of children with autism more than doubled to one in every 68. The incidence rate for boys is particularly tragic, with one out of every 42 being diagnosed, the CDC reported.
“The Agency for Persons with Disabilities is responsible for caring for Floridians who are developmentally disabled,” Annino said. “And what’s happening is that they’re turning off the spigot and routinely denying applications.”
The three rulings released last month suggest the state is using the eligibility process as the faucet.
A crash in the bedroom
Maria Garaitonandia and her daughter were talking in her bedroom when they heard the crash.
Down the hall in the bathroom, she found her son, Marco, sprawled on the ground, convulsing. The shower was still running and the walls were spattered with blood. She dropped to the ground and wrapped her son’s head in a towel as his long legs kicked wildly.
“I remember thinking, if he breaks a toe, so be it,” Garaitonandia said. “But I’m not letting go of his head.”
While her daughter called 911, Garaitonandia held her six-foot-tall son down. His seizure lasted eight minutes, and when it subsided, her jeans were soaked in blood. Doctors closed the gash in his head with six staples, before she took her son home.
Only about 5 percent of the people diagnosed with childhood epilepsy have Lennox-Gastaut syndrome, Tapie’s diagnosis. The syndrome is devastating. It causes multiple types of seizures that are nearly intractable, and often is associated with mental retardation. The condition is incurable.
At the awful peak of Tapie’s condition, he suffered 70 grand mal seizures each month — or about two each day. When Tapie is convulsing, there is little anyone can do to stanch the seizure.
Doctors had told Garaitonandia early on that the epileptic seizures would exact a horrible toll, and that her son likely would suffer from permanent cognitive impairments. But it wasn’t until Tapie was a teenager that his mom was able to get a reliable diagnosis. Though Garaitonandia is a U.S. citizen, she had been living in Mexico with her husband, Tapie’s father. When Tapie was 14, she took the boy to Philadelphia to try a new diet and treatments.
The diet didn’t work, but Garaitonandia returned to Mexico with a crushing new diagnosis: Tapie, his two front teeth chipped from violent convulsions, had mental retardation in addition to the seizure disorder, and would benefit from a specialized curriculum that would allow him to learn at his own pace. The 2007 evaluation would prove to be crucial nearly a decade later when Garaitonandia was seeking help from Florida disability administrators.
In 2014, Garaitonandia permanently moved her two children to Miami in search of better care and insurance that would cover her son long-term.
She reapplied for Social Security and Medicaid, the state’s public insurer for the needy, while Tapie attended his senior year at Miami Coral Park Senior High School. The school once again tested the then-21-year-old; his IQ was 61, a result that comported with Tapie’s earlier diagnosis of mental retardation.
Garaitonandia’s lawyer, Stephanie Langer, said Tapie is “exactly what APD is designed to protect. They can avoid a group home and keep him independent his whole life.”
But when Garaitonandia asked for her son to be enrolled in Florida’s community-based program for people with developmental disabilities, APD said no.
In eligibility papers, and then through two separate hearings — a Miami appeals court panel praised Garaitonandia for presenting her case to an administrative judge “in a polite and effective” manner — agency administrators said Tapie had not been diagnosed with mental retardation until after his 18th birthday, which meant he failed to meet one of the criteria for enrollment.
Miami’s Third District Court of Appeal said that APD had dismissed the 2007 written report of Tapie’s neurologist at Children’s Hospital of Philadelphia that diagnosed the boy as having “chronic [brain disease] resulting in mental retardation.” What’s more, the appeals court panel wrote, APD’s decision was rendered by an agency employee who never met Tapie, and “ did not contradict any of the assessment reports and testimony by medical professionals” who had.
Garaitonandia’s lawyer, Stephanie Langer, said Tapie is ‘exactly what APD is designed to protect. They can avoid a group home and keep him independent his whole life.’
The appeals court ordered that APD “grant [Tapie’s] application for benefits” under the state’s community-based care program. As a practical matter, that entitles Tapie only to be placed on the state’s waiting list.
It could be 10 to 15 years before his name gets called for government assistance, Langer said.
APD, Langer said, “fought to stop him from getting on the wait list. This is just the beginning.”
After two decades of experimenting with medication, implanted devices and special treatments, Tapie is down to about 15 seizures each month, mostly at night. Garaitonandia sleeps with her door open so she can hear the telltale gasps.
“That’s what it’s like for families of disabled people,” Langer said. “Everyone is living under this umbrella of stress that’s unimaginable.”
Sometimes, if the shuttle carrying him home from his graphic design classes takes too long, Tapie nods off. Then Garaitonandia gets the same call from 911 letting her know her son seized again. It reminds her of the bad days, when he seized so hard he hurt himself.
“I would see that and a little piece of me would die,” she said.
She wonders what the future holds; what will become of her son when there’s no family left to care for him?
“You want to drape yourself over your child like a blanket to kind of protect them,” she said, “but you can’t.”