The Secret Sacrifice

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

Janis Adams, an electric-company employee in Waynesville, Mo., knows her local mental-health system well. Her son Caleb Quesenberry, who has been diagnosed with bipolar disorder, has been in and out of hospitals for a decade. Caleb, now 13, would routinely visit the hospital for a week or so, be stabilized and then go home. But in the fall of 2001, after he grabbed two knives and threatened to kill himself and his mother when she asked him not to watch a cartoon, Adams realized that Caleb needed more intensive care.

She contacted residential treatment centers in her area, but administrators told her that her Medicaid insurance would not cover the services she needed. The only way they could take Caleb, they said, would be topersuade the state to fund his treatment. And to do that, Adams would have to relinquish custody of her son to the state's child-welfare system. "I didn't want to give him upto get him the help he needed, but I couldn't protect him from himself," Adams says. "I had to do something, and as awful as it is, this was the only thing I could do."

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Adams is not the only parent who has been forced to make this wrenching choice. Though the exact number of children affected is unknown, scores of families in atleast 26 states have had to cede legal guardianship that is, give up the authority to make decisions concerning their child's residence and care in order to qualify forservices. This often involves removal from the home, either to a facility orto the custody of a trained foster family where the child receives intensive care somewhere in the community. Child advocates estimate that 1 in 5 families with mentally ill children in the U.S. has surrendered custody in exchange for treatment ofa child with bipolar or some other disorder, including adhd, schizophrenia or depression.

"Custody relinquishment has been a well-kept secret to the public, but what's clear is that when you have a child with asthma or a heart problem or diabetes, you go to a doctor. When you have a child with a serious mental-health problem, you often go to child welfare," says Mary Giliberti, a senior attorney at the Bazelon Center for Mental Health Law, based in Washington. "Aside from being inhumane, it's fiscally irresponsible and ends up causing more damage to families."

Indeed, to the injury of cutting the tie between parent and child, many state foster-care systems add the insult of making no distinction between children who have been given up in order to qualify for mental-health care and those who have been removed from their homes because of abuse or neglect. Some systems may even require parents of emotionally ill kids to declare thatthey are neglecting or abandoning their child an admission that may get them listed in a state registry, available for background checks to potential employers.

The result is that instead of relieving the emotional stress these families suffer, the process often exacerbates it. Says Barbara French, who in 1995 was forced to give up custody of her bipolar granddaughter for three years: "After committing her to state custody, I couldn't work for two years. I guess you would call it a nervous breakdown." It's no better for the kids, already fragile, who may also feel abandoned. Joe Squillace, health-policy analyst for Citizens for Missouri's Children, says a common lament by parents is the pain of hearing their child ask, "Why are you sending me away?"

So why do these kids end up in state hands? In part, it's because most private health-insurance companies rigidly cap mental-health coverage, which means even middle-class families that can afford private insurance often cannot afford long-term psychiatric care. And since many financially strapped states do not have an adequate number of providers and do not fully take advantage of Medicaid, even those children with Medicaid cards are frequently put on waiting lists or turned away. In Missouri, 53,000 children are in need of mental-health services; the state's Department of Mental Health is able to treat only 11,000. Once kids are in state care, however, expanded health treatment is mandatory under federal child-welfare laws, and there are plenty of federal dollars to ensure that assistance.

States have tried a variety of routes to address the problem. Thirteen have passed legislation allowing families to retain legal custody of a child when the sole issue is mental health. The Missouri statute, enacted in August, gives the judge overseeing the case the authority to distinguish between a child in need of care and a child with abusive parents. This has the potential to make it easier for the parents ofmentally ill kids to stay involved with their children.

Some states have dedicated funding to expand community mental-health services so children in need can see a doctor early on as outpatients and thus be less likely to require more intensive and costly treatment later. A few states, most recently Kansas, have applied for federal waivers that allow parents who are not eligible for Medicaid to receive intensive home-and community-based help for their mentally ill kids.