Toward the end of The Boy Who Loved Tornadoes, Randi Davenport's powerful new memoir of struggling to find help for her mentally ill son, she fires away at "community-based care" -- the goal behind North Carolina's terribly failed overhaul of its mental health-care system.
"[Community-based care] is a great idea, in theory," I interrupted. "But what happens when they won't take people like my son? Where is he supposed to go? So far, my only experience of community-based care is that it seems to be a strategy to deny services to the people with the greatest and most complex needs."
To be fair, many local providers are doing their best with the deluge of patients that the state rained on them a few years ago when it decided to shift the responsibility for caring for the mentally ill from state hospitals to community programs. But the overhaul has left many patients and their families in Northwest North Carolina and the rest of the state trying to slice through mounds of red-tape. Frustration compounds heartache.
Davenport, the executive director of the James M. Johnston Center for Undergraduate Excellence at UNC Chapel Hill, found herself in the same boat as families from varied backgrounds. Like them, she desperately wants to help her loved one. Her son, Chase, was an autistic child who had seizures. His problems intensified several years ago, when he hit 15. He heard voices and imagined plots against him. Sometimes he didn't recognize his mother, and told her that his name was "God" at one point and "the Grim Reaper" at another.
Chase's diagnoses have included autism, mood disorder, severe psychosis and schizophrenia, depending upon which doctor Davenport consulted. At UNC Memorial Hospital, a doctor told Davenport that her son would need around-the-clock institutional care for the rest of his life.
He wasn't getting any better at the hospital. He was reasonably comfortable there. But a hospital social worker told Davenport that "one of these days your insurance company is going to kick him out and you'd better have a place lined up when that happens." Davenport supposed that Medicaid would kick in if that happened. The social worker, however, told her that Medicaid will follow the insurance company's lead.
Davenport searched for a place that would take her son "but the mental-health facilities didn't want a kid with a developmental disability and the developmental-disability places didn't want a kid with a mental-health issue. In the state of North Carolina, you had to be one or the other; you were not allowed to be both," she writes.
After literally being dragged out of UNC Memorial, Chase was taken to John Umstead, a state psychiatric hospital that doesn't treat people with developmental disabilities. Davenport met her son there and gave him his stuffed bear. He chewed on its nose, "his face white and haunted," and stared at his mother.
He called the hospital a prison. His mother said she could understand, but it's a hospital, and he had to come there because the insurance company wouldn't pay for him to stay at UNC Memorial anymore. He "kicked me as hard as he could," Davenport writes, and a nurse steered him away.
Davenport kept fighting to find her son a bed in a facility that would treat both his developmental disability and mental-health problems. She called, phoned and wrote mental health-care officials and got nowhere. She considered a lawsuit. Finally, with the help of a powerful man on the UNC campus, she got Chase into the Murdoch Center at Butner, a state developmental center that provides residential treatment and care for young men with dual diagnoses.
Murdoch is not "community-based care." But Chase, 22, is doing well there, and frequently visits his mother.
She doesn't name the powerbroker in the book. But Bill Friday, the president emeritus of the UNC system, acknowledged it was him in a recent story in the Charlotte Observer.
"He was sort of like the angel on my shoulder," Davenport told the Journal last week. "As grateful as I am to him for his intervention, it's completely wrong that this is the way families in the state of North Carolina have to get services."
jrailey@wsjournal.com
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