Editor’s Note: In the coming days, Patch will look at Iowa’s mental health system, its deficiencies and whether a spate of mass shootings should change the conversation. This is the first in a series of three articles.
From Thanksgiving weekend seven years ago when she found her son curled in a fetal position under a blanket in an Iowa train station until his sudden death last September, Loretta Sieman shuddered at every breaking news report of a mass shooting.
The gunman could have been “my Kevin,” she said.
Kevin Sieman’s death four months ago today cut a life short at 34 years. But it ended a years-long mental health struggle that drove the once gregarious West Des Moines Valley High School student leader scurrying into closets to escape voices in his head that told him he was being pursued, that the government wanted his brain, and that his mother, who had done nothing but love him, was the enemy.
Read Part 2 of this series: Legislators Say $20 Million in Mental Health Funding Needed; DHS Says Only $1.5 Million Required
Read Part 3 of this series:
Her son’s torment over, Loretta Sieman plans to use the narrow window of opportunity that opens anytime there’s a high-profile shooting, as there was at Sandy Hook Elementary School in Newport, CT, last month, to “change the conversation” about mental health care in Iowa.
Sieman said she’s dismayed that the response so far to the Sandy Hook tragedy has primarily come from people on both sides of the gun-control debate. Instead, attention should be shifted to what she and a task force she's assembling say is a growing national mental health crisis.
“Putting a gun in everybody’s hands is not going to solve the problem,” Sieman said. “This is a people issue.”
Mental Health Care is Public Health Issue
In Iowa, the debate when the Legislature reconvenes Monday won't be so much about gun control as it will likely be about funding a mental health system that lawmakers overhauled last year. Sieman and other mental health advocates say that with the Sandy Hook tragedy still fresh in the public consciousness, the discussion needs to be broadened.
Earl Kelly, the CEO of one of Iowa’s largest community-based mental health agencies, Des Moines-based Eyerly Ball, said lawmakers need to regard a growing mental health crisis as a public health issue.
Nationally, 2.4 million Americans live with schizophrenia, 5.7 million have bipolar disorder and 14.8 million American adults suffer from a major depressive disorder, according to the Centers for Disease Control and Prevention. That’s one in 17 Americans living with a serious mental health illness.
Such a startling rate of incidence should prompt discussion about mental health in the broader context of a public health issue, Kelly said.
In Iowa, about 180,000 people, or 6 percent of the population, have a serious mental illness, according to the National Alliance for the Mentally Ill.
“If we were talking about an outbreak of (tuberculosis), as they are in northern Europe right now, it would definitely be seen as a public health crisis,” Kelly said. “Something would get done.”
Kevin Sieman was living in California when he and reality parted ways.
He had a good job with John Madden Sports, made friends as easily as he had back home, and appeared to be thriving. Until one night in the fall of 2005 when he called his mother in West Des Moines and spoke words that would alarm any parent – “Mom, no matter what, I love you” – there had been no reason for the Siemans to be concerned that his life in California was anything but normal.
When Sieman's parents didn’t hear from him again, they authorized his apartment manager to open his residence. It was in shambles. On a scrap of paper was the word “Osceola.”
“Do you know what it feels like to have to call the police because you’re afraid of your son, to tell them he doesn’t belong in your home?”
Amtrak stops in Osceola. In what friends and coworkers described to the Siemans as Kevin’s altered state of reality, he was trying to make his way home.
Dr. Robert Sieman, a prominent West Des Moines physician, used every connection he had to try to find an acute-care psychiatric bed for their son. They finally found the one remaining bed in the Des Moines metro area at the tax-supported Broadlawns Medical Center, where Polk County’s uninsured residents go for medical help.
That’s a common complaint about mental health-care delivery system in Iowa, which has a chronic shortage of mental health beds. According to the National Alliance for the Mentally Ill:
- Iowa ranks 47th in acute-care psychiatric beds per capita with only 609 beds in community hospitals and 140 in the state’s four mental health institutes.
- Iowa is ranked 47th in the nation in the number of psychiatrists per capita, and 46th for the number of psychologists per capita.
Within days, though, Kevin – smart, but also cunning, his mother said – appeared lucid before a judge and argued convincingly that he had not been hearing voices in his head, that he was fine and the whole thing had been a big misunderstanding.
He even said that his mother was dead, although she sat muted in the courtroom gallery behind him, unable to offer testimony because Kevin was an adult, prevented by the law from helping her son.
Wall of Privacy
One of the obstacles to connecting people like her son with the services they need, Sieman said, is HIPAA, the Health Insurance Portability and Accountability Act of 1996.
The federal law creates a legal wall of privacy that protects patients’ confidentiality, but shuts out the people often most intimately involved – families – from hearing care details or from speaking about what it was like to live with someone whose demeanor could change in a flash from sweet to threatening.
“One minute he was our Kevin, and the next minute he wasn’t,” his mother, said, choking back emotion. “Do you know what it feels like to have to call the police because you’re afraid of your son, to tell them he doesn’t belong in your home?”
Sieman said the parallels between Kevin’s symptoms and those of the killers in a spate of mass shootings – Sandy Hook was at least the 16th mass shooting in the U.S. in 2012 – and other high-profile cases are hauntingly similar.
Closer to home, Sieman identifies closely with Joan Becker, who encountered many of the same roadblocks when she tried to get help for her adult son, Mark, who shot a beloved Iowa high school football coach, Aplington-Parkersburg’s Ed Thomas, in 2009. At the time, Mark Becker was in the throes of what mental health experts at his first-degree murder trial described as a downward schizophrenic spiral.
Sieman says she understands why people are flummoxed by the system and why it takes a tragedy to jolt people out of complacency.
“I was in government and have been active in the community,” said Sieman, who has served on the West Des Moines school board, city council and countless charitable boards. “My husband has been a physician for how many years, and we struggled. What about people without that background and people without families or who are indigent?”
Mental Health Advocates Say Debate Over Funding Isn’t Enough
After her son pronounced her dead in open court and a judge refused her right to dispute it, Sieman – who is regarded around central Iowa as a force of nature when she gets behind a cause – bucked the status quo and hired an attorney. Kevin was living with his parents and dependent upon them financially and emotionally, and she thought they should have a say in his mental health and other medical care.
“I am Loretta Sieman, Kevin’s mother,” she recalled telling the judge after the hearing in which her son prevailed and was released from Broadlawns Medical Center, “and you will be seeing me again.”
Months of legal wrangling followed in a fight that sometimes put Sieman and her husband on opposite sides. She eventually prevailed and Kevin was committed to a state mental health institute, where he was diagnosed as having delusional paranoid schizophrenia.
“You have just committed me,” Sieman remembers Kevin telling her. “How can you do that to me?”
Eventually, though, Kevin agreed to give his father guardianship and waived his HIPAA rights. It put everyone – family, caregivers, psychiatrists – on the same page and led to his placement in a community-based treatment where he flourished.
Their story ended happily, even though Kevin died suddenly and prematurely of congestive heart failure after being hospitalized for a diabetes-related treatment his father thought was routine.
“Maybe this is why God had to take him,” Sieman, a devout Catholic, mused. “Kevin always said I could talk about it, but he couldn’t, not yet. This is why I have to speak. I can’t just sit back any more.”
She takes solace in knowing her son’s demons have been quieted, and in being able to give him a voice in the upcoming legislative debate that mental health advocates say doesn’t go nearly far enough in addressing Iowa and America’s growing mental health crisis.
Ostensibly, the debate will be focused on funding the Mental Health and Disability Services Redesign of 2012, last session’s overhaul that creates regionally administered an locally delivered services.
Mental health advocates are skeptical much will change under the system redesign, which they say was driven by the same factors that prompted a handful of other reform efforts over the past few decades – an acute shortage of mental health resources and limited access to them.
Those initiatives failed because money fell short, and for the 2012 redesign to be any different, legislators will have to find a reliable funding source to pay for the new system that is sustainable over time.
“The Legislature looks at how much money they have to throw at it and then throws it into a pool and says to the various interests competing for it, ‘you get this much and you get this much,’ ” said Eyerly Ball’s Kelly. “But they don’t really think about the bigger public health issue.”
What’s Ahead in this Series:
On Monday, we’ll look more closely at what the state’s overhaul of the mental health delivery system potentially means to providers. The 2012 redesign was supposed to eliminate barriers, but many mental health advocates worry it falls far short because eligibility will be limited to contain costs. On Tuesday, we’ll hear from local legislators on mental health funding and related issues.