For the past 10 months, Adriana Parrales has been confined to her bed, breathing through a ventilator and fighting her insurance company for her life.
Her days are spent with nurses monitoring vital signs that can be stable one minute and swing out of control the next, because of a genetic condition that causes debilitating tumors on Parrales’ brain and spine.
After she was placed on a ventilator that has breathed for her since she was “trached” last December, her insurer — Florida’s Medicaid program — tried to deny her the round-the-clock nursing care she needed to stay out of the hospital and in her home.
In August, Parrales — who suffers from a genetic disorder that afflicts 100,000 Americans — joined a class-action lawsuit with four other Floridians, challenging the state’s oversight of community-based and in-home care for thousands of frail elders and adults with serious disabilities. The suit alleges that a lack of clear standards is to blame for the repeated denials of care that Parrales and other patients have to fight on a daily basis.
“They just shuffle you in circles just waiting for you to go back to the hospital or hoping you die,” said Adriana’s mother, Rita Parrales.
The program that serves Parrales and the others was designed to divert elders and adults with disabilities away from costly nursing homes and institutions and allow them to live at home or at least in a community setting. Nursing care and other services are paid for by Medicaid, the joint state and federal insurer for the most needy, under a “waiver” of federal rules that grant the state greater flexibility in spending. Florida has several such waivers that, in theory, allow the state to avoid more costly institutionalization.
Plaintiffs can point to no authority that obligates states to draft their rules and contracts in a way that is understandable to layperson Medicaid recipients. Agency for Health Care Administration motion to dismiss
The Agency for Health Care Administration would not discuss the lawsuit until a version of this story already had been published. Instead, administrators pointed to a motion to dismiss the suit that said no beneficiaries of the Medicaid long-term care program have been harmed by the problems and that no one has been forced to seek care in a nursing home because community services fell short.
Although the agency says in its response the plans are not confusing, even if they were, “Plaintiffs can point to no authority that obligates states to draft their rules and contracts in a way that is understandable to layperson Medicaid recipients.”
On Friday, AHCA Secretary Liz Dudek offered this statement: “The Agency takes very seriously the level of care all Florida Medicaid recipients receive. We have strengthened our contracts, giving the Agency the authority to ensure that our plans are providing the highest quality of care. We strive as an Agency to keep patients in their homes and communities and we have designed our program with multiple incentives to ensure just that. AHCA will continue to fight to ensure that all 89,000 recipients in the Long-term Care program have access to and receive high quality of care.”
AHCA, one of three state agencies that oversee health for Floridians, administers the Medicaid program, which serves about 3.8 million in the state.
Under federal law, patients enrolled in the Medicaid program may choose to live in a nursing home or other institution, and they generally cannot be required to wait indefinitely for a bed to become available. Choosing to live at home, or in another community setting, is another matter. States can set limits on the level of care or services patients receive in the community, and they also can require patients to wait — sometimes for years — for a slot to open.
As a consequence, most of the state’s community care programs have wait lists — some quite long. The Long-Term Care program that serves Parrales, for example, has a wait list with 32,000 names.
Another program, which serves Floridians with developmental disabilities — such as mental disabilities, cerebral palsy, autism and Down syndrome — has a wait list that tops 20,000 people. The list was eliminated in the late 1990s after a Fort Lauderdale federal judge threatened to have the federal government take over the state’s long-troubled disability program. But lawmakers allowed the list to climb again as they chose to limit dollars to the program.
In 2011, lawmakers ordered that the community-based care program for elders and disabled adults, the Long-Term Care community program, transition into a managed-care model, along with virtually all of the state’s Medicaid efforts. Statewide, seven insurers participate: United Healthcare, Sunshine Health, Molina, Amerigroup, American Eldercare, Coventry, and Humana.
Without minimum requirements for care, the services that frail and disabled adults receive vary wildly across the state, said the suit, filed by Disability Rights Florida, a federally funded watchdog group; Southern Legal Counsel; and Gainesville lawyer Nancy Wright.
Even as AHCA failed to set meaningful standards, the lawsuit says, the agency disseminated “thousands of pages” of policies and procedures that are “so voluminous, confusing and irrelevant that they cannot be effectively applied or enforced.”
Meanwhile, the suit claims, plan administrators have severely throttled back on the home nursing care and other services that enrollees need in order to live safely at home.
Parrales’ family first realized something was wrong in 1991, when she was 5, and fell off a set of monkey bars because her right hand began to curl oddly. Her pediatrician misdiagnosed the curved hand as unremarkable and gave her a hand brace. But during a routine orthopedic visit, a physician's assistant glimpsed Parrales’ hand and declared: “That's a neurological condition. Go to Jackson.”
At Jackson Memorial Hospital, Parrales was diagnosed with a type of neurofibromatosis that causes noncancerous tumors to grow on the auditory and balance nerves and along the nervous system. For many years, neurofibromatosis was erroneously called Elephant Man’s disease after a 19th century Englishman whose large tumors made him a traveling curiosity. In later years, researchers concluded Joseph Merrick had another condition, called Proteus syndrome.
Parrales knew only that it might cause disfiguring and painful problems in later years.
“I was only 5,” she wrote to a reporter. “So I really had no clue.”
Other than spinal surgery at age 9 to remove a grapefruit-size tumor, and hearing loss in one ear that complicated her balance, Parrales went through the next nine years with few symptoms. She was popular and confident, editing the yearbook at Coconut Creek High. She wore stiletto heels to her prom and graduation in 2005, making her way across the stage.
“I wanted to show my mom I didn't have to limit myself because of bad balance,” she wrote.
Her symptoms intensified after graduation: Her hearing worsened, she began to fall often, and she once nearly choked to death, requiring a 911 call for help with CPR. Parrales’ doctors found a growing tumor on her brain stem, but because of insurance claim denials and queries, she had to wait to remove it the following January. The operation, done in two sessions lasting 23 hours, left her face paralyzed.
Parrales spent seven months in the hospital, and endured another surgery on a spinal tumor. Then she spent another four months in rehab, where she developed severe pneumonia and had to relearn how to write, walk and swallow. For six months after that, Parrales and her mother, Rita, lived at the Ronald McDonald House on Jackson’s medical campus.
When Parrales returned to her Miami home, she needed nursing around the clock, she said. But her insurance company offered only a home health aide who assisted with buying groceries and performing household tasks.
Over the next seven years, Parrales had at least four more surgeries to combat growing tumors on her spine and brain. She started using a wheelchair in April 2013 and was hospitalized twice for pneumonia and hospital-borne infection. For Rita Parrales, her daughter's progressing disease became a way of life.
Despite her worsening symptoms, Parrales took classes at Miami Dade College and graduated with an English degree and a 4.0 GPA in 2013. She planned to study law and criminology at the University of Florida, but in October 2014, Parrales was hospitalized again at Mercy, where the staff lacked the resources to care for her. Because of the conflicting standards set by her insurer, she said, Parrales’ transfer to the larger Jackson facility was blocked for almost a month.
When she finally arrived at Jackson in December 2014, “I was basically dead,” Parrales wrote. They put her on a ventilator — a procedure she had thought would be temporary — and sent her home the following month.
When she came home, Amerigroup, Parrales’ managed care provider, authorized nursing care for one hour every weekday. Rita Parrales, a nurse, gave up her job to care for her daughter full-time. But full-time meant she worked almost every hour feeding, cleaning and watching her daughter day and night.
She began sleeping on the floor next to her daughter’s bed.
When Rita Parrales finally reached out to Wright, the lawyer, at the end of March, she was out of options.
“I was appalled,” Wright said. “There’s no way I wasn’t going to get involved.”
After Wright interceded, Amerigroup began providing Parrales 16 hours of care a day and reimbursing her mother for the other eight as a companion. Her rigorous care regimen still involves half a dozen doses of medicine every few hours from 8:30 a.m. to past midnight and her mother still takes the lead when guiding less experienced nurses through her care. Her daily regimen, interspersed with a diet of Pediasure and cranberry juice, also requires nurses to stretch her paralyzed legs regularly to avoid debilitating pain, and ensure she can suction out the phlegm and secretions that build up in her lungs.
Her only regular companions are her mother, her nurses, and her respiratory therapist, Juan Martinez, who shows up every day to check her ventilator and help keep her lungs healthy.
Martinez has been there every day since he started eight months ago.
On a recent Wednesday, he set out his tools: a stethoscope (for listening to her lungs) and his percussor (for dislodging phlegm from her chest). He wore hypoallergenic gloves, a barrier gown and a mask to avoid introducing disease to Parrales’ immune-compromised system. After those procedures, he pulled back the purple blanket to check her legs. He adjusted the foam cups under her feet that relieve pressure on her thin heels, then listened to her diaphragm.
Next came the aerosol treatment — “helps loosen up secretions in the lungs, open up the airways,” he said — which he dripped from a bottle into her ventilator tube. The ventilator whirred under the spray of the aerosol droplets. He clipped the plastic pulse oximeter onto her finger, to measure her pulse, oxygen saturation and blood pressure, and he turned the monitor toward Parrales so she could see the numbers for herself.
Martinez grabbed a red and yellow Etch-A-Sketch on the dresser. “Lungs sound good,” he wrote with the stylus.
Parrales gave a thumbs up.
He scribbled more. “Congested?”
Parrales pinched her fingers. A little.
“Have you been doing breathing exercises?”
A nod. She then pointed to the percussor and shook her head. Not today.
With the percussor, Martinez’s daily sessions can run over an hour. On this day, he stayed about 45 minutes.
“She’s a very, very, very resilient patient,” Martinez said as he finished cleaning Parrales’ ventilator tube. “She’s very strong.”
Parrales’ case is emblematic of how difficult it is to fight for care regardless of circumstances, Wright said.
“It’s happening with every managed care organization,” she added. “The source of it is that the state of Florida has given them essentially ingredients, with no instructions on what to make with those ingredients.”
Parrales says what she wants most is to get off the ventilator that has shaped her life for the past 10 months. Her worst fear is being institutionalized and torn away from the home she knows. She still hopes she can return to school, and that she might be able to leave her bed without help again.
“Every American is entitled to live a life with liberty and the pursuit of happiness,” she said. “Disabled people have the same rights, too.”