The Secret Sacrifice

STEVE LISS FOR TIME
Janis Adams, with her son Caleb Quesenberry, 13, who returned home in June

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Attention is also being paid at the federal level. Just this month, Senator Susan Collins of Maine asked the Department of Health and Human Services to identify the parts of federal and state laws that force parents to relinquish their kids unnecessarily. Congress is debating the Family Opportunity Act, which would open up Medicaid coverage to a greater number of mentally ill kids.

Still, say advocates, these measures do little to address the reason that the custody problems arose in the first place: a persistent misunderstanding of mental illness, particularly as it affects children. A 2000 survey by the National Mental Health Association found that 71% of those polled thought mental illness is caused by emotional weakness. The belief that emotionally ill kids are just misbehaving is perhaps even more widely held. Says Darcy Gruttadaro, director of the child and adolescent action center at the National Alliance for the Mentally Ill: "Despite scientific advances in our understanding, it hasn't translated into a shift in our actions. With ill children, there are these constant innuendos that it's about the conditions within the home, or parenting style."

But families with mentally ill kids can't wait for attitudes to change and so must continue the uphill battle of navigating an inadequate, fragmented system. After a year at a nearby chapter of Boys Town, the organization that houses and treats needy children, Caleb Quesenberry met requirements set by the facility and returned to his home in Waynesville in June. His mother regained full legal custody last month an automatic status change made after Caleb had been home for 90 days. Adams says Caleb is doing "pretty good" so far. Still, she is worried that if Caleb should have a relapse, she will be vulnerable to losing him again, despite the recent change in Missouri's child-care laws. "After what we've been through, I don't hold out too much hope for it," she says, wary of the new measures. "For right now, we're doing the only thing we can taking things one day at a time."