Miami man shot, left brain damaged in ambush. Now, his insurer is cutting back critical care

Nearly nine months ago, Andy De Leon was shot in the head in an ambush in West Miami-Dade.

The man accused of the shooting, a jealous security guard who worked at a zoo featured on the Netflix “Tiger King” series, remains jailed awaiting trial. De Leon, 30, once a vibrant physical therapy assistant, remains in a bedridden “vegetative state,” awake and breathing on his own, but unable to speak or move.

And life appears about to get even worse for De Leon and his devastated family.

His healthcare insurance, his family says, had stopped covering his stay at a specialized Miami hospital. No rehab center or nursing facility — and relatives have inquired with dozens — will take him because of the insufficient medical insurance. He may soon be discharged to his parents’ home where, at best, he’ll get a nurse for a couple of hours a day — not nearly enough.

“It’s not a luxury at all. He needs 24-hour care and if I could take out my whole savings account, I would, but I still would not be able to afford it,” said his tearful sister, Tatiana De Leon, 39, who met with hospital administrators Tuesday afternoon to talk about options for her brother.

De Leon’s situation, experts say, is not unique and underscores flaws in how the U.S. healthcare system deals with extremely vulnerable populations, including those suffering from what’s now called “disorders of consciousness.” The American public largely knows about people in vegetative states through the case of Florida’s Terri Schiavo, who in 2005 was at the center of a heated political and legal battle over whether her husband could have her feeding tube disconnected to allow her to die.

In De Leon’s case, his family wants to keep the 30-year-old alive. Trying to do so has meant countless hours of phone calls and emails to navigate a Byzantine system of medical insurance, government-run programs and social services.

His parents and siblings hold on to a flicker of hope for some sort of recovery.

“I do believe he hears us. When he hears the voices of mom and dad, and myself and some of the people he really loved, his eyes start to blink very rapidly and he begins to make noises with his mouth,” Tatiana De Leon said. “With his facial expressions, we believe as a family it could potentially mean he’s understanding us.”

But Tatiana, tears in her eyes, knows it may be wishful thinking. “But the doctors don’t believe so. It’s a very hard thing to watch.”

The Ambush

De Leon was shot on the night of May 19, 2021. He had never met the man suspected of shooting him.

That night, he had been out with a co-worker, when police say the woman’s ex-boyfriend opened fire on their car outside a home in the Olympia Heights neighborhood of West Miami-Dade. De Leon and the woman managed to drive away, stopping near a gas station on Bird Road and 107th Avenue, where police say accused gunman Jonathan Clemente opened fire again.

Clemente turned himself in and confessed, according to Miami-Dade police. He remains in jail, awaiting trial on charges of attempted murder.

He’d also been investigated for a previous killing: the March 2021 shooting of his friend Frankie Cordero outside a South Miami-Dade home. Clemente had claimed self-defense and had not been charged.

The woman was shot in the chest and survived after being hospitalized in stable condition. De Leon was clinically dead when he arrived at Kendall Regional Medical Center, where doctors worked frantically to revive him. The bullet destroyed a vertebral artery, cutting off blood flow to the back of his brain. The lack of oxygen led to a series of strokes.

From the beginning, doctors warned his family that he might never regain consciousness. Three months after the shooting, he was moved to Select Hospital of Miami, a 47-bed “critical illness recovery hospital,” which family members visit every day to keep him company.

At Select, De Leon made progress doctors doubted would happen. He opened his eyes, can swallow and even relieve himself without the need for a catheter. “That’s progress to us,” Tatiana said.

Still, scans show little brain activity. While De Leon can breathe on his own, he must be hooked up to a feeding tube. His arms and legs have atrophied, gnarled inward. Staffers turn him over every two hours to prevent bedsores.

His medical care, for now, has been paid for through De Leon’s insurance carrier: Bright HealthCare, which he obtained as part of the Affordable Care Act, better known as Obamacare.

A spokesperson for Select did not return requests for comment. In a statement late Monday, Bright HealthCare said the “family has suffered an incredible tragedy.”

“While commercial insurance policies, like Medicare, do not provide coverage for extended long-term care, Bright HealthCare has looked into the situation and will be following up with the family directly to discuss findings, options and next steps. Bright HealthCare is also going to provide the family with a case manager to help identify and coordinate resources so their loved one has access to needed services.“

After the Herald published this story online on Tuesday, Bright Health did an about-face, telling relatives on Thursday it would continue to pay for his stay at Select until accommodations could be made to care for De Leon elsewhere.

With help from a social worker, Tatiana had applied for De Leon to live in over 25 rehab or nursing facilities. “He’s been denied both because of his condition, or because of his condition and his age, because he’s so young,” Tatiana said. “He’s considered a long-term patient and he would be there too long.”

Most rehab facilities won’t take him because he can’t move. One agreed — but the insurance denied the stay, Tatiana said.

Home care challenging

Home is the most likely option. But for his parents in Westchester, caring for their son would be difficult and likely overwhelming.

Tatiana lives in Hollywood, and must work to support her son. De Leon’s mother also works to make ends meet. His father, who is now 65, is frail and suffering from the early onset of Alzheimer’s. So far, Tatiana said, the social worker has said the insurance company could only pay for a nurse for a couple of hours a day.

“While we would love to have him home, we certainly don’t want to give him poor care,” Tatiana said. “We want him to receive the best care possible.”

The family has applied for help via Medicare — but recipients generally can’t receive benefits until 24 months after they’ve become disabled. And even then, Medicare only pays for limited stays in hospitals or nursing homes, said Kathy Holt, the associate director of the Center for Medicare Advocacy. At-home nursing can caps out at 35 hours per week, in some limited cases.

“Medicare is really not the answer for long-term care,” Holt said.

The family is now hoping for help through Florida’s Medicaid long-term health-care program, a process that requires dealing with multiple state agencies and having De Leon deemed disabled. It’s a daunting process, made even more overwhelming by the sheer number of forms and phone calls that have fallen to Tatiana, who also works full time as a pharmaceutical representative.

Even getting money from Florida’s victims compensation fund has been delayed — first because she used the wrong form, then because the correct form expired.

“One of the hardest things has been trying to navigate this very complex, very convoluted, almost broken system,” Tatiana said.

The family’s frustrations are not unusual, said Michael Ashley Stein, a professor and executive director of the Harvard Law School Project on Disability.

Because the health-care system and policies have been created piecemeal over time, he said, various agencies don’t always “interact well and people fall through the cracks.”

“We have various populations that are vulnerable and marginalized and we don’t do enough to protect them,” Stein said. “And that’s true of people like Andy.”

This story was originally published February 15, 2022 at 7:00 AM.