The Demons of Childhood
Young brains break. Then comes the broken care system
Many parents are stunned to learn that their insurance will not cover psychiatric medical care for what is clearly a seriously ill child. "If a child had cancer we would be infuriated if parents were made to beg for care," says child psychiatrist Harding. Kelly Troyer has what she calls "excellent private insurance" and secondary Medicaid as well. But even with that, Alex was refused treatment because the psychiatrist did not take Medicaid. When Troyer said that she had private insurance and would pay out of pocket, she was told that this, too, was impossible.
Care and reimbursement problems are further complicated because children who are mentally ill typically have a whole range of other needs. Alex also needed speech therapy and help with his learning disabilities and auditory processing problems. In a perfect world, a child psychiatrist would monitor both the medication and these other therapists, teachers, even the child's pediatrician.
A few communities are experimenting with ways to better coordinate all the services--what's called "continuum of care" or "wraparound" services. But in most places corollary services remain badly fragmented, and parents like Troyer are left to search on their own. When Alex became psychotic--"talking about blood and guts and gore"--Troyer had to turn to the Internet. Online she discovered Robert DeLong, a child neurologist at Duke University Medical Center. She E-mailed him, and magically he responded that he could squeeze Alex in for an appointment that week. She drove the four hours to Duke and finally got Alex the kind of care that had eluded him. DeLong took a detailed family history, evaluated Alex, and concluded that he had bipolar disorder. He then started him on new medications, including lithium and Depakote.
Even with this good fortune, Alex still had trouble getting continuity in his care. He at first seemed to get better, but a month later, on a Monday, the pediatrician gave him a blood test to see how he was tolerating the Depakote. The doctor was alarmed at the level of enzymes that can indicate liver damage, so he changed Alex's medication. Tuesday Alex began acting up at school, and by Wednesday he had tried to stab his teacher with a pencil. Alex and his mother and grandmother ended up at the Greenville Memorial Hospital emergency room.
Alex was completely out of control. In fact, Troyer had never seen him so violent. Finally, he was strapped down and dosed with Versed, a light anesthetic. It did nothing. Alex needed to be hospitalized, but there was no place in Greenville that had available beds, and the psychatrists whom the ER staff called did not answer. So he was taken by ambulance to Charter Hospital in Augusta, Ga., 21/2 hours away. He screamed the whole trip.
Many families end up in the emergency room when their child loses control. In most states, community services are so scarce that the system becomes clogged, creating a kind of gridlock of care. According to a 2001 report by the Baselon Center for Mental Health Law, children in crisis are brought to an emergency room where they remain until a bed opens up in the psych ward, but there are fewer and fewer such beds. Residential programs, which would be the natural next step, are often full because children cannot be discharged into communities that have no intensive services. It's a classic Catch-22, because children in the community don't get the care they need, and end up in crisis, in the ER--and the cycle goes on and on. "Over and over again I have patients who get shuttled from hospital to hospital to get even the most basic mental health services that they need," says Richard Barthel, a child psychiatrist at Children's Hospital of Wisconsin in Milwaukee. "The consequences on these children and their families are devastating."