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Old 09-29-04, 07:44 PM
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Struggling for control

Posted on Tue, Sep. 28, 2004

Amber: Struggling for control


Knight Ridder Newspapers

(KRT) - EDITOR'S NOTE: In this three-part series, we detail how children with schizophrenia, bipolar disorder, depression, anxiety and other mental illnesses succeed or fail in getting mental health services. Through the eyes of children who are in treatment, locked up, or on the brink, we explore what it takes to get services, what's available and the impact on families when a child needs mental health care.

DETROIT - The first time, she threatened to kill her dad.

The second time, she swallowed a handful of pills.

Each incident landed 15-year-old Amber Kauten in a psychiatric hospital this summer, where the Shelby Township, Mich., girl said she finally got the kind of help she was craving.

"When I was in the mental hospital, I felt like the other kids understood me," said Amber, a wide-eyed brunette with a soft smile. "I just like to go there so I can think. I just feel like I need someone to talk to whenever."

When you're 15, lots of things can get you down. But for Amber and millions of other youngsters like her, the sadness, anxiety, irritability, violent mood swings and feelings of isolation are more than just a passing phase. They're symptoms of mental illness. Amber takes Concerta, which is prescribed for Attention Deficit Hyperactive Disorder, and Lexapro for depression.

In the United States, the Surgeon General estimated about 21 percent of 9- to 17-year-olds have a diagnosable mental disorder, but a report released in June by George Washington University said up to 80 percent of those children go without care.

"When families are identifying that a young person has a problem and seeks to get help, it's hard to find, sometimes impossible to find," said Sharon Peters, president and CEO of the advocacy group Michigan's Children. "Basically, we just don't have enough of those services to meet the kind of needs out there."

What's needed is early intervention - such as peer-to-peer support groups or therapy with a child psychologist - but treatment options are woefully lacking, Peters and other advocates say. Still, early intervention could prevent crisis situations like the one Amber found herself in.


There were plenty of signs that Amber was in need of help before she was hospitalized. Running away, using drugs and dating a man more than a decade older, Amber "just kind of ran and did what she wanted," said her mother, Michelle Kauten, 36. She would haul Amber home and set rules, but she felt helpless and didn't understand how her daughter went from being "a perfect little girl" to a violent, disobedient teen. Like many parents, she didn't know where to turn.

Patrick Barrie, who oversees mental health services at the Michigan Department of Community Health, acknowledges the need for more services. But he said his agency - which funds the local mental health service providers - has been cash-strapped, the victim of federal and state budget cuts.

His agency estimates 545,000 Michigan children had a mental disorder in 2002.

In that year, his department served more than 28,000 children age 17 and under who had diagnosed mental illnesses, and another 1,192 children with developmental disabilities and mental disorders. Medicaid provided another 25,000 Michigan children with short-term help in 2002.

Other public entities, such as schools and the juvenile justice system, also provide some mental health care for children, but there is no central clearinghouse for determining how many Michigan children are getting help. In fact, Michigan's mental health system is a stupefying confluence of government agencies, schools, and public and private health-care systems, all with varying qualification standards and funding mechanisms. They do, however, share one common theme: a severe lack of money.

"The money crunch has affected everyone, but it's especially true for children's services," said Mark McWilliams, director of education advocacy for Michigan Protection and Advocacy Service. Based in Lansing, the organization is a federally mandated watchdog group that advocates for people with disabilities.

And it's an issue facing children's mental health systems nationwide. In 2002, nearly two-thirds of states cut mental health services, according to the National Mental Health Association.

Provider shortages, low payment rates and the budget reductions plaguing the mental health system add up to fewer services that are harder to access, advocates say.

Because funding for mental health services in Michigan has remained flat since at least 1998, it "starts to create an atmosphere of scarcity where everybody's more concerned with their financial stability, and it starts to create restrictions on care," Barrie said.

"Agencies are less optimistic about the future, so they plan more conservatively for the future," Barrie said.

That means local community mental health authorities and other agencies have stricter standards for accessing care and are providing less of things such as therapy, said Malisa Pearson, staff development and community education coordinator for the Association for Children's Mental Health, a nonprofit advocacy group based in East Lansing.

"Kids that five years ago would have automatically been eligible for county mental health services are being turned away because they aren't so bad that they are significantly impaired to the point that they're really struggling," Pearson said. "If you're not really severe, you don't meet the criteria to get services at all. So then the families get really desperate."

In other words, children who are suicidal, breaking the law or otherwise posing a threat may be hospitalized or locked up, but often nothing exists to help them at the first signs of a problem.

Sorting out how to access services can be a daunting task, especially for people like Kauten, a single mom trying to raise two children and keep a job in the midst of Amber's outbursts, rule-breaking and disappearances.

Schools sometimes provide a gateway to the mental health system, though parents have complained that school officials are reluctant to evaluate students, perhaps because of the high cost of providing special education and ancillary services, such as counseling. According to a 2003 U.S. Department of Education study, the average cost of educating a child with learning disabilities in special education was $4,100 and $7,700 for an emotionally disturbed child. That's in addition to Michigan's regular per-pupil funding of nearly $7,000.

Advocates say school officials often hesitate to stigmatize children by labeling them as mentally ill, or may assume that other public and private mental health systems will step in. More likely, though, children's mental health needs are met by the child welfare or juvenile justice system, if only in a limited capacity.

"There's often a dispute between who's going to provide what kind of services," said McWilliams.

"There's a real challenge to helping those kids in the juvenile justice or court system get back into the community - and if they don't, they're headed to the correctional system," he said. "For society it's a very expensive and wasteful thing, and you're wasting the potential of a kid's life."

That's something that Amber and her mom fear.


After about three years of emotional turmoil, Amber's self-destructive behavior put her where many other mentally disturbed children end up: in the custody of the police.

When Amber first started exhibiting problems, her mom didn't know where to turn. At 12, Amber confessed to using marijuana, but her mom believed her when she said she'd stopped. In fact, Amber said, she was eventually smoking so much - hours every day - that she stopped feeling like she was getting high.

"I'd just get depressed and then I'd turn to drugs," she said. "It felt good. But once I started coming down, everything would start to hit you again."

A neighbor introduced Amber to huffing Freon and taught her how to steal it from air conditioning units around their mobile home park. The high, she said, would only last a few minutes, so they would collect garbage bags of the gas and spend hours inhaling it. High one afternoon, after about 25 hits, she passed out, struck her head and had to be taken to the hospital, where she was treated for a concussion. "It didn't stop me," she said.

At 14, frustrated with her mother's rules and drawn to kids she now admits were bad influences, Amber ran away for several days. When she voluntarily went home, her mom called the Shelby Township police, who charged her with incorrigibility. Amber was placed with an aunt, and the charge was later dropped.

According to Shelby Township Police Sgt. Kenneth Underwood, if a child is generally disobediant - breaking curfew, running away, getting physically abusive - parents can call police and they can file incorrigibility charges. The matter then goes to juvenile court, where a judge rules on dismissal, probation or sends the youth to a detention facility depending on the seriousness of the charge.

But when Amber returned to her mom's house last September, she continued to do drugs, ignored her curfew and ran wild. She also started dating a 26-year-old man, despite her mother's insistence that she stop seeing him.

One day a few months ago when the man showed up at her home, Michelle Kauten called the police, who charged the man with contributing to the delinquency of a minor and again charged Amber with incorrigibility.

Amber's father, who is divorced from Michelle and lives a few miles away, also came to the home to speak with Amber. She said she was furious with him and "told the police I wanted to go to the hospital because I wanted to kill my dad." They took her to Harbor Oaks Hospital, a juvenile mental health facility in New Baltimore, where she spent five days dealing with her anger.

But just two weeks after she returned home, Amber's boyfriend brought her food from Taco Bell. While Michelle called Amber's father, Amber slipped into her bedroom and took eight to 10 sleeping pills.

"I just took pills so I could go to the hospital to get away from my dad. I just thought I'd get drowsy," Amber said. But, realizing she'd gone too far, she told her mom, who called an ambulance.

"I could feel myself dying," said Amber, who had her stomach pumped before she was taken to another psychiatric hospital, Havenwyck, in Auburn Hills, Mich.


That's when the mental-health funding crisis hit home for the Kautens. Amber has private insurance coverage through her mom's job at Ford Motor Co., but like most insurance, its mental-health coverage is limited. For each of Amber's psychiatric hospital stays, she was covered for five days. And though her doctor wants her to receive more intensive therapy, it would not be covered.

The U.S. Census Bureau reports that nearly 70 percent of children in the United States are privately insured, but they're out of luck once they reach their coverage limit. One therapy session, for instance, can cost more than $100, and residential treatment facilities, with 24-hour care, can cost in excess of $250,000 a year.

According to the Bazelon Center for Mental Health Law, a Washington, D.C., advocacy organization for people with mental disabilities, 94 percent of health maintenance plans and 96 percent of other plans have restrictions on mental health benefits.

Families at a certain income level can qualify for Medicaid - which covers about 68 percent of Michigan children receiving mental health services - and some federal programs exist for children who are uninsured or underinsured. But increasingly, children whose parents are not insured and don't qualify for Medicaid or other public help are creating a growing segment that advocates call "the gap population."

"If you're not Medicaid-eligible and you don't have private insurance, you're really in a bad spot now. Those are the kids that are going to get the least, regardless of what they need," Pearson said. "Even the ones that are getting through the door are getting less and less."

Barrie said the statute on mental health care "directs us toward children with the most severe disorders when we don't have enough money to cover everybody." It's a struggle, he said, and he laments that more preventative services can't be available.

Experts say early intervention is best when children start to display mental or emotional disorders, which will only grow worse if they're not appropriately addressed. Behaviors can turn more destructive, and the frustration of being misunderstood, mistreated or cast aside can contribute to school and career failure, alienation, substance abuse and, in some cases, suicide, which is the third-leading cause of death among teens and young adults, according to the Centers for Disease Control.

"Childhood is such an important time to intervene," Barrie said. "Childhood is a time when there's a great capacity to make modification before some of those" disorders "have hardened into patterns."

According to a landmark 1999 Surgeon General's report, about half of children with a mental disorder are impaired mildly, while the other half are significantly impaired; of those, one in 20 is considered severely impaired. Most commonly diagnosed are anxiety disorders, such as post-traumatic stress disorder, but children also can have the same disorders as adults, including bipolar disorder, schizophrenia and chronic depression.

But because children can't always communicate what they're feeling or why they lash out, become introverted or sulk, it can be difficult to distinguish between normal childhood behaviors and more serious mental health issues. Parents, fearing blame, also may be reluctant to have their children labeled mentally ill, or may regard mental illness as something that only affects adults.

Pearson is frustrated by what she sees as a system that's "all reactive, crisis-driven."

"It is one of the only systems that we don't see as being worthwhile to be a prevention model. There are very good treatment models that work, and people can be productive members of society," she said, citing training for families of children with behavioral difficulties, and respite care to occasionally give parents and kids a break from one another.

"This is just as important as any other disability that we give credence to," Pearson said. "We have to make an investment in these children and families because it's good for us as a community."


Amber said that, ideally, a 24-hour crisis center would exist for times when she feels she could erupt or be tempted back to drugs. Through her hospital stays and counseling, she said she's learned coping mechanisms for both, but - just a few weeks since her last hospitalization - she worries that sometimes they won't be enough.

"When I'm mad, I can't be at home because I don't trust myself. Sometimes, I get so angry that I feel like I could wreck this whole house," she said.

As for the marijuana and other substances, Amber concedes, "Sometimes, I miss drugs." But, she says, she wants to stay clean.

"I don't want to be some druggie because I have high goals for myself," said the sophomore, who wants to go to college and become a lawyer. "I have so many leadership qualities, but I just follow and I don't know why. I'm smart, but I do dumb things. I feel like I still need to change more."
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