The Secret Sacrifice

By Harriet Barovick

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 to persuade 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 up to 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."

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 at least 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 for services. This often involves removal from the home, either to a facility or to 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 of a 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 that they 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 of mentally 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.

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."