Parents of Problem Kids Face Hard Choice

Dec. 5, 2002 -- Jan Durfee faced a terrible choice. Her 9-year-old son Zac desperately needed treatment for emotional problems that were producing terrible tantrums that could four or five hours, but there was no way she could afford to pay for it.

Durfee had gone to her local mental health agencies near her home in Cuyahoga Falls, Ohio, and received the maximum amount of services available: counseling, therapy, and lots of medication. But, she says, it simply was not enough.

A psychiatrist told her that Zac, who had bipolar disorder and several other mental illnesses, should be sent away to a residential treatment center, which could cost $50,000-$100,000 a year. Unable to afford that, and with Zac's insurance not covering the amount for mental illness, Durfee was offered a solution that she said made her sick: if she gave up custody of her child, the state would pay for the treatment.

There are more than four million children nationwide with "significant" mental illness, but most state health systems do not offer the same money and programs for children's mental problems that they do for physical illnesses.

In most states, there is more treatment money available to children in state custody than those living with their own families. For families who cannot afford private mental health care without help from the state, the only option is to surrender custody of their child to the state — a legally binding move in which all decisions — where the child will live, what he or she will eat — are made by the state, with no say from the parents.

'I Want to Be at Home'

Carmen and Mike Simpson made what they say was the "extremely difficult" decision to give up custody of their adopted 15-year-old daughter to the state of Texas. They had adopted her four years earlier, they say with no idea that she was suffering from reactive attachment disorder, bipolar disorder and several other mental illnesses that sometimes make her erupt in anger and violence, banging her head, hurting herself and even threatening the Simpsons' other children.

Because she was adopted, the state paid for one year of care at a residential facility. But when the year was up and their daughter's doctors said she was still not ready to come home, the Simpsons decided they had no option but to return her to the custody of the state.

In what they say was the worst morning of their lives, feeling that they were betraying their daughter, the Simpsons told her about their decision to return her to the custody of the state's Child Protective Services. They allowed Primetime to film the conversation to draw awareness to their plight, but asked that their daughter not be named.

When their daughter asked, "Am I going to get to come home and you'll be my parents again?," they had to tell her there was a possibility she would not.

"It feels like giving me up, Mom," she said. "It feels like giving me back.... I don't want to go anywhere else. I want to be at home. I want to be at home with my family. I want to be a normal kid."

The Simpsons are angry at the choice they had to make. "Is this in the best interest of the child, to force her to go through something like this?," Mike Simpson said. "I certainly don't think so.... There has got to be a better way to do it than this."

Disparity Seen Between Physical and Mental Illness

Mary Giliberti, a senior attorney who works with the Bazelon Center for Mental Health Law, says it is "barbaric" and "inhumane" to force parents to give up custody in order to get treatment for their mentally ill children. If a child had a physical illness such as asthma or cancer, she said, "it would be unthinkable to take that child and say, 'You have to go to child welfare and give up your child to get help.' It wouldn't happen."

Child welfare officials in Texas and Ohio agreed that the two cases were troubling, but said they had no other option because of existing legislation and the complex rules that govern medical funding streams at the local, state and federal levels. Critics of the current situation also cited the legalities of custody relinquishment in various states, and a general lack of attention and funding for mental health.

But one state, New York, has a potential solution — a program that uses Medicaid money in a special way to provide services for children at their own home that ordinarily they could only get if they were sent away to a residential treatment center. In the mid-1990s, the state negotiated a waiver from the federal government that would allow it to provide Medicaid dollars to qualifying families whose income was outside Medicaid's normal criteria.

The waiver allows New York to pay for a program that allows families to keep mentally troubled children at home, with the assistance of a therapist who is on call 24 hours a day.

Peggy Tobin, a therapist with Occupations Inc., a private nonprofit that provides therapists to the New York program, estimates the system has a 90 percent success rate. "When I talk success rate, I mean that the child is in the home, functioning, doing well in school," she said.