His family?s challenge is to find a different facility for him by Sept. 22. But because he is a 47-year-old Medicaid patient with cerebral palsy, who relies on a machine to help him breathe, every eligible nursing home in driving distance of Sarasota has offered the same answer: no.
On Aug. 26, government regulators gave Harmony Healthcare Rehabilitation Center four weeks to discharge and relocate its 83 residents, after which Medicare and Medicaid payments will automatically stop. By Thursday seven patients were left ? three of them, like Brower, on ventilators.
The Florida Agency for Health Care Administration had cited the facility repeatedly for its failure to fix patient safety problems, revealed in 2009, when a ventilator patient apparently choked to death after eating a chocolate chip cookie she was not supposed to have.
Brower?s family said they were happy with the care and affection he received at Harmony during his two years there. His mother visits almost daily, and often finds his face marked by lipstick kisses.
?We?re not the easiest people to please, having been involved in my brother?s care for the longest time,? said Brower?s sister, Christina Pitchford. ?I think what was most remarkable about this place, and the most relief for my mom, is that people actually just love him like a family member. It?s really painful to come in here now and see the staff members crying.?
Brower?s case highlights a hole in the safety net for aging or disabled residents who are not wealthy enough to fund their own care. Many nursing homes will not accept certain patients who require special assistance, such as a ventilator, because the care is more costly and the state reimbursement under Medicaid is not high enough.
There are only 22 such facilities statewide, and, with Harmony?s closure, none in Sarasota. As a result, many patients who need specialized nursing home care, and depend on the government to pay for it, wind up far from home ? and family.
Harmony ? which had an unusually high concentration of Medicaid and ventilator patients ? is among three Florida nursing homes to be closed by AHCA regulators this year, and one of seven since 2005. It was the only site in Sarasota to offer long-term care for ventilator patients.
Of five such residents still there on Aug. 29, places have been found for two ? one in Sarasota and one in South Florida, said Polly Weaver, bureau chief of field operations.
?At this point it looks like all the placements will be made by Monday,? Weaver said this week. Although she could not discuss Brower?s case, she said, ?With any resident, we?re looking at all the options that will be workable for the family. We want the family to have that opportunity for continued contact and oversight.?
Brower?s relatives are not so confident. They fear that Florida?s policy against reimbursing nursing homes for the extra cost of ventilator care will result in his placement to another state.
A ventilator pushes warm, moist air through a tube into a patient?s lungs. The airway must be checked regularly for food and saliva, and complications are common. Weaver could not say how many beds there are for long-term ventilator patients in Florida, but with only 22 active state-approved sites, ?it?s not an endless list of placements available.?
Ventilator care requires close monitoring by trained nurses who must make rapid judgment calls, said Kevin O?Neil, a longtime Sarasota geriatrician who is chief medical director for Brookdale Senior Living, a national retirement residence company. Hospitals have asked Brookdale to consider starting vent care, he said, but it is a complex service that should not be entered into lightly by a facility, just to fill beds.
Facilities want to increase occupancy, ?so they say, ?OK, we?re going to start taking these people,?? O?Neil said. ?To say that you?re going to do ventilator care but not train the nurses to be able to provide that care, that?s bad ? and that happens.?
To fund this extra training, other states pay higher rates for Medicaid residents on ventilator care. But efforts to convince Florida legislators to change the rules here have not succeeded. Hospitals often have a hard time discharging patients who need ventilator care. Tampa General Hospital recently sued the estate of such a patient, who died after a five-year stay.
For the last nine months or so, said his mother, Elizabeth Pitchford, Brower has depended on his ventilator full-time, taking oxygen through a tracheal opening in his neck and being unable to speak. He uses his strikingly expressive face and contagious smile to communicate with those who know him ? his family, the remaining caregivers at Harmony and the many friends he has made in his 40 years in Sarasota.
When Brower was diagnosed with cerebral palsy as a child, no one expected him to live this long. His bones break easily, and it is difficult for him to stay in his chair or bed for very long. The stuffed animals so many people have donated ? the family stopped counting at 8,000 ? help to keep his arms and legs positioned comfortably.
And talking about them always lights his face with that smile.
?The general assumption is that he probably can?t respond,? said Christina Pitchford. ?Your whole life, everybody assumes you have a mental disability because of your physical disability. Once people realize he knows exactly what?s going on, they start to ask him questions. And then he sweet-talks them and wins them over.?
Brower has been mentioned in the Herald-Tribune before ? in 1978, when he was 13 and had to endure five hours on0 the bus that took him to and from school; and in 1996, when he sold greeting cards he designed and painted, using a brush attached to a bicycle helmet. He was a regular at United Cerebral Palsy telethons, his family says, and some 50 people attended his birthday party outside the nursing home on Aug. 28.
Now, his family worries that he will be sent far away. With the handful of Florida ventilator care centers that accept Medicaid declining to take him, the only safe place for him could be a hospital.
?It would be tough enough to have him leave Sarasota,? said his stepfather, James Ellis. ?But if he goes to the hospital, they could send him anywhere ? to Tennessee or North Carolina.?
As Brower half-reclines in a wheelchair surrounded by his family, the attachment to his tracheal tube sometimes comes loose when he moves. Elizabeth Pitchford reconnects him and washes her hands. The next time, the task is performed by Jeff Moran, a family friend who was Brower?s home health aide in 2008, before he was hospitalized with pneumonia and required nursing home care.
?After everything, I just fell in love with him and got myself involved with the family,? said Moran. ?I worry that if we can?t have Todd close, he?ll have to depend on brand-new people who don?t know him.?
Christina Pitchford believes that distant placement would be a death sentence for her brother. Brower has been hospitalized three times in the last nine months, and each time a family member had to go to an emergency room to explain his care.
?I?ve been there when people try to stretch him out,? she said. ?You stretch him out at this point and his bones are going to break.?
Brower?s ?crazy arm,? which waves constantly even with the medications he takes to control spasms, makes it hard to insert an IV tube, she continued. ?One of us has to be there to tell them how to do these basic things, because his body is not textbook by any stretch of the imagination.?
Elizabeth Pitchford said she has been waking up at 3 a.m. every day since Harmony got the order to close. When Brower first came to the nursing home, she said, they talked about whether he should have a Do Not Resuscitate order. He refused, even though he knew how grueling it would feel to be saved.
?He is so full of life and he believes in God,? she said. ?This young man does not want to die.?
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