TAMPA — When the administrators of Tampa General Hospital evict Roberta Robinson from her bed, as planned, she faces a terrible choice: She can return home, where her husband and adult daughter both are incapable of caring for her, or she can die alone, more than 330 miles away — in Georgia.
Robinson, 63, of Seffner, suffers from diabetes, high blood pressure, pulmonary disease and a progressive neurological disorder, called myotonic dystrophy, that has left her profoundly disabled. Robinson requires a ventilator to breathe. Her husband makes medical decisions on her behalf, because she can only communicate “yes” and “no” in response to questions.
For the past year, Robinson has been hospitalized at Tampa General after she suffered a heart attack while living at home with round-the-clock nursing care. The hospital now wants its bed back, and has told a Hillsborough County judge that Robinson is capable of being discharged to a less intensive setting.
Robinson “remains in possession of the hospital bed and hospital room against the consent of TGH,” Tampa General’s attorney, Patricia S. Calhoun, wrote in a lawsuit. Tampa General Hospital “is entitled to use its hospital beds for the care and treatment of patients who have a clinical need for acute hospital care. Roberta Robinson is not such a patient.”
But there is nowhere for Robinson to go.
Though doctors cleared her for discharge on March 29, 2018, Robinson cannot return home. Her husband, who undergoes dialysis three times each week, is disabled, too. He requires a wheelchair to get around, and, at the moment, he is in physical rehab at a long-term care facility. The couple’s 28-year-old daughter, Nicole, has the same degenerative disorder as her mom, and she cannot be a caregiver, either.
The astringent language of the eviction request notwithstanding, even Robinson’s lawyer isn’t blaming Tampa General for her client’s predicament.
Under normal circumstances, a frail elder such as Robinson would transfer to a nearby nursing home. But because Florida’s reimbursement rate for nursing home patients who require ventilators is so low, only two homes in the state were willing to take Robinson.
One facility, Franco Nursing & Rehabilitation Center, is in Miami. Its administrators won’t accept Robinson unless her husband, who is her medical decision-maker, agrees to sign a “do not resuscitate” order, records say. He has refused to do so.
The second nursing home, Memorial Manor in Pembroke Pines, will accept Roberta Robinson only if one of its four beds is available and if Joseph Robinson travels to the facility in person to apply. He has not made the 500-mile-round trip from Seffner.
That leaves the Miller Nursing Home, a 107-bed long-term care facility with a 50-bed unit for patients who need ventilators or dialysis. It’s in Colquitt, Georgia. Robinson would be alone and isolated there, leaving her family members, who use buses to get around, unable to make the 660-mile-round trip.
“I love her,” Nicole Robinson told The Miami Herald Thursday. “If she were to go that far away, I’d feel like she already died.”
“I want to spend as much time as I can with my mom,” she said.
As Robinson remains bedridden at a hospital that no longer wants her, her ordeal has spawned two lawsuits, one each in state and federal court.
On Thursday, a watchdog group for Floridians with disabilities filed suit against Mary Mayhew, secretary of the state Agency for Health Care Administration. (The lawsuit by Tampa General seeking to repossess the hospital bed dates back to September.) The new suit alleges that health administrators, whose agency pays for Robinson’s care, are violating the Americans with Disabilities Act by denying Robinson the ability to live near her family. The landmark civil rights law, signed by then-President George H.W. Bush in 1990, prohibits governments and institutions from discriminating against anyone on the basis of a disability.
Disability Rights Florida, the advocacy group, is asking a federal judge to prevent Tampa General from transferring Robinson to a facility “far from” her home, and to order AHCA, which oversees the state’s Medicaid program, to provide Robinson nursing care in the region where she lives.
“Transferring [Robinson] to either the nursing facility in Miami, Florida or Georgia, due solely to her diagnosis and condition of requiring a ventilator to breathe, would permanently isolate [Robinson] from her husband and daughter and end all familial relationships for her,” states the group’s lawsuit, signed by Amanda Heystek, Robinson’s attorney.
Lisa Greene, a spokeswoman for TGH, declined to address Robinson’s case due to patient privacy laws. “However,” she said in a written statement, “Tampa General Hospital works closely with every patient and family and sympathizes deeply with those who need ongoing care outside of the hospital. We always seek to act in the best interest of our patients.”
Mallory McManus, a spokeswoman for the Agency for Health Care Administration, said the agency does not comment on pending litigation.
Robinson’s dilemma is hardly a revelation. More than 15 years ago, a private consultant hired by the state Department of Health recommended that Florida develop “a statewide coordinated care system” for people like Robinson, and increase the Medicaid reimbursement rate for patients who need a ventilator to breathe. Medicaid is the insurance program for impoverished and disabled Floridians.
State health regulators have “received requests for assistance in locating [nursing homes] willing to accept individuals who are ventilator-dependent and ready for discharge from a hospital or trauma center,” the May 2003 report said. “In these instances, agency staff has experienced difficulty in locating [homes] willing and/or able to provide the necessary care.”
In 2017, lawmakers did increase what Medicaid will pay nursing homes for a resident who needs a ventilator, by $200-per-day. The law, which took effect in October, raised the average overall reimbursement rate to $435. But, even with that increase, nursing homes have little financial incentive to take on a patient such as Robinson when private insurers and Medicare pay almost twice the Medicaid rate.
“All of Florida’s nursing homes have turned [Robinson] away because she is dependent on a ventilator and ‘insufficient funding’,” Heystek wrote in a December email to state health regulators.
Though rates vary by region, Medicare, the health insurance program for Americans 65 and older, pays about $785 a day in Palm Beach County. And most private insurers pay rates on par with Medicare, said Tom Parker, director of reimbursement for the Florida Health Care Association, a state lobbying group for nursing homes.
The Medicaid insurer in charge of Robinson’s care, Aetna Better Health Florida, can pay a higher rate to place her in a nursing home if it chooses. The rates approved by the Legislature are the minimum required to be paid by insurers contracted by Agency for Health Care Administration to manage the care of Florida’s nearly four million Medicaid recipients. Those insurers are free to pay more for a patient’s care.
Shelly Bendit, an Aetna spokeswoman, said the insurer could not address Robinson’s case unless Roberta or Joseph Robinson signed a privacy waiver.
Robinson’s options are limited by more than just the low Medicaid rates that insurers are willing to pay. There’s also a dearth of nursing homes able to care for ventilator patients. Of the 656 Florida nursing homes that accept Medicaid, only 4 percent — about 30 — have the needed staff and equipment to provide ventilator care.
“And most of them are either in private insurance or in the Medicare sector,” said the Florida Health Care Association’s Parker.
He added that even with the $200 a day bump that took effect in October, nursing homes cannot cover the cost of care for a ventilator patient on Medicaid rates alone. Deciding to provide ventilator care in a nursing home often requires construction, utility upgrades and additional investment.
“You’ve got to hire respiratory therapists, bring in piped-in gas, make sure you have the capital and all of the fixed assets and isolate part of your building,” Parker said. “You can’t do it overnight.”
Georgia’s Department of Community Health, the state’s lead agency for Medicaid, reimburses nursing homes at a daily rate calculated from the facilities’ allowable costs.
Myotonic dystrophy, a form of muscular dystrophy, is a long-term genetic disorder. It is degenerative, and results in progressive weakness of the body’s voluntary muscles. As the condition worsens, it can impair the heart muscles and lungs, making it difficult for a person who suffers from it to breathe. There is no cure.
Heystek first complained to state health administrators in August 2017, after Robinson had languished in another facility, Kindred Hospital in Tampa, for lack of a place to live. Then, too, administrators were planning to send Robinson to Georgia, the only available option.
Robinson remained at Kindred for more than a year. A crisis was averted when AHCA administrators agreed to move Robinson back to her home in Tampa, with 24-hour nursing care to help her family. Robinson remained at home until a heart attack sent her back to the hospital.
She was admitted to TGH on March 16, 2018. In its lawsuit against the Robinsons, the hospital said she “took possession of a hospital bed and hospital room” that day.
After she arrived, the hospital’s lawsuit said, “it was discovered that Roberta Robinson had suffered an anoxic brain injury,” which occurs from lack of oxygen. “Roberta Robinson will require nursing care for the rest of her life,” the hospital said.
Two weeks after Robinson arrived, hospital staff determined she was stable enough to transfer to a nursing home. “Unfortunately,” the hospital wrote, “very few long-term care facilities will accept Roberta Robinson as a patient because of her complex medical condition, particularly her dependence on a respiratory ventilator. TGH social workers have contacted over 350 facilities that have refused Mrs. Robinson admission.”
By August, the hospital had contacted every nursing home in Florida capable of caring for Robinson, the hospital’s lawsuit said. When Robinson’s husband, Joseph Robinson, refused to sign a “do not resuscitate” order for the Miami facility, and he failed to make the trip to Memorial Manor in Pembroke Pines that TGH had arranged, that left only the nursing home in Colquitt.
The next month, Tampa General’s lawsuit said, TGH “revoked its consent for Mrs. Robinson to be in possession of the hospital room and hospital bed she currently occupies and demanded that Mr. Robinson take steps to assist Mrs. Robinson in vacating the premises. Mr. Robinson refuses to cooperate with plans to transfer Mrs. Robinson” to Georgia.
For Nicole Robinson, the prospect of sending her mother to Georgia is not about “refusing to cooperate.” It’s more like her mother is trapped in a no-man’s land of Florida healthcare.
“No one really wants to take care of her,” Nicole Robinson said. “Plus, they don’t get paid for it.”
-- This story was written by Carol Marbin Miller and Daniel Chang.