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Iowa struggles to treat children with mental illness

Tony Leys, The Des Moines Register
Cynthia Shouse, 19, feels it is important to talk with others about her mental health issues so they can know where she is coming from. At left is her mother Rhonda.
  • Available treatment facilities%2C personnel are overwhelmed%2C officials say
  • Some children must be sent out of state for treatment
  • State seeks better coordination of its mental health resources

CEDAR RAPIDS, Iowa -- Cynthia Shouse remembers the day she decided to tell other kids what it's like to have a mental illness.

It was in 2009, shortly after Mark Becker, 24, of Parkersburg, Iowa, killed his former football coach, Ed Thomas. The kids at Shouse's high school riffed on reports that Becker had schizophrenia, which caused hallucinations and odd behavior. They said Becker was evil and should be executed.

"I said, 'You don't know what he's going through. You don't know what it's like to hear voices,'" Shouse recalled.

Shouse, 19, has heard voices in her head for 12 years. She has been treated for mental health issues since she was 3, and her diagnoses include schizophrenia and Asperger's syndrome.

Like thousands of other Iowa kids with mental illness, she's been shunted around the state's patchwork mental health system. She's become accustomed to waiting two months to see a psychiatrist, said her mother, Rhonda Shouse. At one point, she waited seven months to get in a residential program in Des Moines.

Her mother is outraged. "If you go to a hospital with a heart attack, they don't tell you, 'Oh, we don't have a bed. Come back in three days.'"

More Iowa children are being diagnosed with mental illness than in past decades, especially autism and attention deficit/hyperactivity disorder. The increase in children needing mental health care and an inadequate system to help them are among an array of challenges facing this generation of Iowa's kids.

"There really isn't a children's mental health system," said Dr. Jennifer McWilliams, a child psychiatrist at the University of Iowa. "So much needs to be improved — I don't even know where to begin."

Dr. Jennifer McWilliams is a child psychiatrist at the University of Iowa.

Increased rates of diagnoses among Iowa children generally reflect national trends. It's not clear whether the surge reflects more children needing mental health care or more families seeking it, as parents, teachers and physicians gain awareness of symptoms and treatment options.

Regardless, the numbers overwhelm available treatment facilities and personnel. State leaders, mental health professionals and private agencies are trying to straighten out Iowa's system.

Most states are grappling with similar problems of too few mental health professionals and increasing numbers of children seeking help, said Rick Shults, the Iowa Department of Human Services' top administrator for mental health. Rural states tend to have more disparities in service, he said, but it's hard to objectively compare systems nationally.

"There's not very much good, solid data across the nation that you could use to say, 'This state is better than that state at providing children's mental health services,'" he said.

Efforts to improve services gained extra currency this month when President Barack Obama pledged to broaden insurance coverage of mental health care and to train more mental health professionals. His vows came in the wake of the school shooting in Newtown, Conn. Although little solid evidence has been released about the shooter's mental health history, the tragedy has helped train a spotlight on better treatment of mental illness.

Keeping more seriously ill kids in Iowa

Cynthia Shouse is unusually outspoken about her experiences because she wants others to understand what people with mental illness go through. The voices in her head insult her, telling her she's worthless and will never succeed at anything, she said.

Medications help tamp down the voices, but they're a daily presence, and they sometimes flare up. When they became relentless a few years ago, she was told that Cedar Rapids' inpatient services were full. She was sent to a Waterloo hospital for more than a week .

Her mother lacked a reliable car to make the 55-mile drive. So the teen spent her days alone in a strange place.

"That was hard," she said. "I'm so close to my mom, and being that far away from her and not being able to see her every day was very hard for me."

Teresa Bomhoff, a Des Moines activist with the National Association on Mental Illness, said the most glaring problem in Iowa is that it consistently ranks among the bottom handful of states in the number of psychiatrists and psychologists per capita. The shortage is even worse for mental health specialists for children, which means many Iowa kids wait months to obtain expert help. Those delays can be devastating, she said.

"The research is clearly showing that the earlier you can get a kid in for treatment, the less disability you'll have later in life."

Some children's problems become so complex that they are sent to special centers in other states. The arrangements can cause loneliness, complicating already severe mental health problems. They also can cost the state a fortune. Individual cases easily top $100,000.

Treating more of Iowa's children in Iowa is a top priority for state officials seeking to revamp the system. A panel of experts concluded last year that the state could save significant money by improving options in Iowa for the types of severe cases that had been referred elsewhere. Once those kids are brought back to Iowa, the panel said, the state should have more money to improve mental health services for other children with less severe problems.

The state Department of Human Services last year began offering extra payments and training for Iowa agencies willing to take on children with particularly complex needs.

In the second half of 2012, administrators reviewed 30 cases that appeared to be headed out of state and found ways to keep 28 of the children in Iowa, closer to their families. Last month, 78 Iowa kids were being treated out of state for mental health issues, brain injuries or similar disabilities, records show. That was down from 119 two years earlier.

But some parents warn that the state's good intentions could go too far. They worry that their seriously ill children, now making progress in programs out of state, will be returned to inadequate care in Iowa.

Better coordination of care

Another top goal is to better coordinate the mental health resources that are here. State administrators plan to set up a network of what they call specialized health homes. Children with mental health issues would be assigned to one of these agencies, which would coordinate all of their care. The idea is to keep families from feeling like they're on their own.

David Stout, vice president of the Des Moines treatment agency Orchard Place, said he's optimistic that the various agencies can work together better. Stout, who sits on the state commission overseeing the reforms, said too many families face baffling choices.

"They get what the system's got instead of what the family really needs," he said.

Chuck Palmer, director of the Iowa Department of Human Services, agreed with Stout. Too often, he said, families are offered only the services of the agency they happen to contact. They don't always know what else is out there. The new health homes, to be run by contracted agencies, should help, he said.

"You start with the child, with the family and their needs, and you bring the set of services to that child," he said.

The new process is slated to start this summer, and the federal government is expected to pay 90 percent of the costs for the first two years. Over time, Palmer said, the system could save money by helping ensure children are matched with the services they need, instead of wasting time in programs that aren't suited for them.

State reforms also are expected to include peer support programs, in which families who have experience with the mental health system mentor families who are just getting started, said Jennifer Vermeer, who runs the state's Medicaid program.

Rhonda Shouse is ready to sign up for that duty. Parents are overwhelmed when they first have to seek mental health help for their kids, she said.

"It's costly, it's extremely taxing and tiring — and it's overwhelming to not have someone who can hold their hand and say, 'You're doing OK. Here's what to do next,'" she said.

Mental health advocacy organizations have some informal support groups, but Shouse would like to see the process set up more concretely by the state.

"There are plenty of parents like me who would be willing to do it for peanuts," she said. "I want other families to not have to fight the battles I had to fight."

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