Responding to the mental health crisis in NW Iowa: Beating the stigma
This 10-part series, a collaborative effort of the newspapers of Rust Publishing, NWIA, examines the myriad issues surrounding the mental health care crisis in Iowa. Reporters and editors from the Spencer Daily Reporter, Storm Lake Pilot-Tribune and Dickinson County News have contributed to the report
"I remember how it felt - not being able to breathe, right to the point of wheezing, eyes burning from all those tears, heart racing. My throat burns and my chest hurts… I can’t take it sometimes. I’ll claw at my throat because I can’t breathe. It's like how you would imagine a heart attack feels, but different, filled with heartache at the same time."
That's how teenager Jay describes the mental breakdowns he began suffering at age 12, that left him "sobbing and shaking, just a big mess on the ground," then suddenly disappear — as if nothing had happened.
He is one of 13.6 million Americans who live with mental illness, according to the National Alliance on Mental Illness, including 137,000 Iowans afflicted with serious, chronic conditions. An estimated one in four adults will experience mental health issues in a given year, plus about 20 percent of teenagers and 13 percent of children. Many of these struggles go unreported and untreated, often out of stigma that those who ask for help are "crazy" or weak.
"You're not weak because you couldn’t stop it," Jay asserts, "but strong for being able to put up with it for that long.
The landscape of mental health care in northwest Iowa is going through upheaval this season. The sudden collapse of Compass Pointe, which provided addiction counseling for area counties, left local leaders and clients scrambling for other providers, and the surviving providers reaching for a piece of the pie.
Soon after, Hope Haven killed its mental health therapy services and put employees on the unemployment line, as leaders of that agency reported a loss of $1.5 million in the eight years they have provided the service. All this comes on the heels of the state’s still-evolving transition to regionalization in mental health services. The state, under former governor Terry Branstad, closed two of its four mental health institutions amid controversy in 2015. In recent years, at least eight Iowa hospitals, including one in Fort Dodge, have shuttered inpatient mental health facilities, citing financial losses or a shortage of qualified mental health professionals.
A 2016 report by the Virginia-based Treatment Advocacy Center ranked Iowa 51st out of all states and Washington, D.C., with only two mental health beds per 100,000 people, less than half the number the state had in 2010. Iowa ranked 47th in numbers of available psychiatrists and 44th in mental health workers.
IMPACT ON LAW ENFORCEMENT
More mentally ill persons are in prisons than in hospitals in Iowa, the TAC reports, by a factor of 2.6 to 1. An estimated one-third of all inmates in county jails suffer from mental illness.
During Iowa legislative hearings, one deputy spoke of driving 720 miles in one day with a patient in crisis in the backseat, seeking an open bed.
"I think this is a borderline crisis, absolutely," said Buena Vista County Sheriff Kory Elston. "The majority of inmates going through that jail are in need of some sort of help" for mental health or addiction issues, he said.
Rural hospital staffs are also left struggling with troubled patients brought in for evaluation until a place can be found for them. State officials report a total of 731 inpatient psychiatric beds statewide, most offered by hospitals and private agencies. Some seeking care cite backlogs for counseling and treatment at area providers' offices.
"We're all finding out that we are going to have to work together," said veteran Buena Vista County Supervisor Paul Merten. "There is no easy answer. No one is big enough to handle this crisis."
Remaining area providers, like Seasons Center, Jackson Recovery and Plains Area Mental Health, may not be entirely on the same page, Merten suggests.
"Even with regionalization, there is still some sense of competition among the different agencies and providers."
Gov. Kim Reynolds signed a bill into law this month establishing a children's mental health care system, requiring core services, crisis response and community-based services to offset a waiting list that now exists. Area leaders say that the state provided no funds to accomplish these goals, however, and some have balked at an "unfunded mandate" that stands to burden local property taxpayers.
Reynolds hopes to see the "veil of stigma" associated with mental illness replaced with "hope, healing and the comfort of community."
BEATING THE STIGMA
Former Iowa State University basketball star Royce White spoke recently at a high school in Storm Lake. His anxiety disorder — and his fight to have mental health addressed by the NBA — cost him an opportunity for a lucrative pro basketball career after being drafted in the first round in 2013 and signed by the Houston Rockets.
"Mental health is talked about in such hush-hush tones," White said. "You have people who are starting to face the stigma and are now finally admitting that they have a mental health disorder. This encourages others to seek help, and slowly educates society on how prevalent problems are."
White suffers from Generalized Anxiety Disorder — which causes sufferers to go through days filled with exaggerated worry, tension and dread to the point where they may not be able to function.
Mental illness takes many forms, however. Mayo Clinic defines it simply as conditions that affect mood, thinking or behavior — including Attention Deficit Disorder, Bipolar Disorder, Personality Disorders, Depression, Dissociative Disorders, Obsessive-Compulsive Disorder, Post-Traumatic Stress, Schizoaffective Disorder, Seasonal Affective Disorder, panic attacks, eating disorders, suicide or self-harm and Dual Diagnosis — a combination of mental issues and substance abuse as people attempt to self-medicate.
"Drug and alcohol dependence is mental illness. Gambling addiction is mental illness. Addiction is mental illness," Royce told his local crowd.
"Mental health and addiction services need to run hand in hand," agrees Dawn Mentzer, CEO of the Rolling Hills Community Service Region, which provides services to the needy and disabled of several northwest Iowa counties. "You can’t treat one without the other."
A program pioneered in Minnesota, "Make it OK," will debut in Iowa this year in cooperation with the Healthiest State Initiative, encouraging open conversation on mental illness.
CHANGING LANDSCAPE OF CARE
While fighting stigma is an ongoing battle, boundaries of those with mental health challenges must also be respected, insists Kim Wilson, of the National Alliance on Mental Illness (NAMI) affiliate for Northwest Iowa, based in Spencer.
"We're working hard to provide education and awareness opportunity, but ultimately it is a rather private and personal matter. The important thing is to have the resources available for people as they are ready to come forward. It's all about connecting people," she said.
Unlike strictly medical services, mental health care is different for every person. "A lot depends on that individual’s needs, the family’s expectations. We have to work on our end to figure out what that need looks like."
The loss of some services like Compass Pointe, and the loss of state institutions, may not necessarily prove to be setbacks as the means of delivery for services evolves, Wilson feels.
"We need to be where the people are, where they will feel comfortable to access services, and feel like their needs are going to be met. Community-based programs are going to be appealing to a lot of people. There will always be some who believe mental health patients need to go to a hospital, but that isn’t necessarily the case."
Care will become more integrated, she feels, as mental health providers work directly with schools, hospitals and other programs. "Mental illness touches every facet of life. Medicine is involved. Employers are involved. Education is absolutely involved."
SCHOOLS BEGIN TO RESPOND
Storm Lake schools became one of the state's first districts to add a full-time mental health care professional to its staff, contracting with Plains Area Mental Health. Psychotherapist Shannon Williams finds that various forms of trauma through the childhood years, most often stress from home and family situations, and sometimes sexual abuse, can blossom into mental illness.
"As they get into high school, we’re seeing it transfer to depressed behavior and suicidal thinking," she said. "They’ve internalized it."
Over 700 students with mental-health related issues were served in her first year with the district in 2017-18, most handled by counselors but 81 of them needing her professional psychological care. Of the students she has worked with, 32 percent could be diagnosed with Post Traumatic Stress Disorder.
The Iowa Youth Surveys in 2016 found 35 percent of girls in 11th grade in Iowa schools met the clinical definition of depression within the previous 12 months, and 16 percent of boys did.
"I just drown," describes Kim, a recent high school graduate, on her experience with depression.
"It’s a cycle of trying not to let anyone down, but then you do let them down… it's got to be happyville and stuff, but that doesn’t work if you have depression," she said. "I faked a lot of my happiness. I smiled everywhere I went, but inside I was kind of dying."
Kim started a program in her Iowa high school called "Behind the Mask."
"We all talk about (mental health problems) like it's no big deal. It’s nice to talk to people who understand what you’re going through,” she says.
Prairie Lakes AEA Administrator Jeff Herzberg, also a member of the newly-created state Children's System State Board, says schools around the region have been "screaming" for help on mental health problems for years. He’s lived it — his mother struggled for a lifetime with mental illness.
"It means that life for everyone around that person becomes unpredictable," he said. "She would appear very put together, smart, funny one moment, and the next would be chaos."
Among other things, he and his state group want universal screenings of children for potential issues. "Iowa has no real collaborative system to make sure kids are being served," he said. In cities, services are disjointed, and in the rural areas, there may be no services at all. In a series of listening posts held in each AEA district, over 500 comments were received from parents and educators urging action, he said. "That should tell legislators we have a real problem."
Universities in the state are recognizing growing need for services, too. Buena Vista University will begin a new cohort program this fall as Iowa's only hybrid mental health counseling master’s program. The goal is to elevate people who already may be working in counseling or human services to gain licenses in adult, child, family and addictions mental health services.
TREATING THE WHOLE PERSON
Many of those living with mental illness in the region, as well as those struggling with tragedy or abuse situations, are turning to self-medication, according Kim Scorza, CEO of Seasons Center, a provider based in Spencer.
"Coordination of care is everything," she said. "The field has come to recognize that we have to treat the whole person. It may be alcohol or drug abuse, or compulsive gambling, or eating disorders — literally, mental health care has to respond to any type of human hurt."
Doctors and mental health professionals need to work hand in hand, she feels. "Mind, body and soul - you can’t separate it out."
Is mental illness more prevalent today — or is it just more likely to be diagnosed and addressed?
"“I don’t know if there is an increase per se. I’ve been doing social work for 25-plus years, and years ago it just didn’t get talked about. When a situation became extreme, people were sent away. Now we’re seeing children who are the second and third generation living with mental illness — their parent or grandparent had significant issues that were never treated, and often the child grows up with those issues," Scorza said.
"For so many years, we didn't want to deal with mental health. Families would just say, 'Oh, that's my crazy aunt.' It was not to be talked about."
While billions of dollars a year are spent on treating the body, little attention has been invested in caring for the mind. "It’s been taboo," Scorza said, "and we as a society have kind of created this problem."
All that is beginning to change. "The younger generation is more apt to talk about their mental and emotional issues. College-age students today are much more likely to have open, natural discussion of mental health and substance issues than their parents ever were."
THE FUTURE OF CARE
"Ideally, people would be served in a home environment. Historically everything has gone through emergency rooms. We have people being transported an hour, or clear across the state to find that inpatient bed, just to be brought back again," Mentzer said.
Rather than taking people to services, Mentzer foresees a system where a crisis counselor will respond when and where law enforcement, medical facilities or schools need them.
Hospital settings are giving way to more "crisis home" facilities like one located in Sac City that serves the region, but that doesn’t always prove cost-effective. Mobile crisis response units are beginning to be rolled out in northwest Iowa, and mental health regions are discussing future "access centers" — 24 hour, no eject, no reject facilities where anyone in crisis could come, Mentzer said.
Services need to cross all lines. "We’re talking about people with really complex needs, not just someone with depression," she said. "No provider really wants to take them in because they have multiple, complex issues. There are probably 30-40 people in our area like that who we know about right now.
"I can’t say what it will look like," Mentzer says of the future direction. "We're still trying to define the vision."
Stigma is always going to exist in some form, she predicts. "The state is trying a lot of marketing efforts to reduce stigma and encourage people to get help. Social media is also having an impact. Kids are more willing to talk about it, parents are more aware, society is becoming more accepting. The schools are doing a great job trying to engage the kids, and that early detection is huge. Strides are being made. It’s gratifying to see everyone beginning to come to the table for this dialogue."
Governor Reynolds, while celebrating steps forward in mental health care in the state, stresses that much remains to be done. "Creating a mental health system that we envision is complex, and it can’t happen overnight," she admits. "I look forward to building on the momentum that we have here today."
• This series will continue with the next installment, examining government's role in responding to mental health needs in the region.
- At the forefront of mental health (06/04/19)
- New programs, static funding strain Iowa's mental health system (06/04/19)
- The people who care (06/04/19)
- Mental health caseload takes a toll on hospital ERs (06/11/19)
- MHI Cherokee: a portal between the past and future of mental health care (06/11/19)
- Law enforcement challenged with limited resources (06/18/19)
- 'The biggest mental health facility in the state is the county jail' (06/18/19)
- The two Jeffs -- Part I: Criminal cases reveal hidden hurt (06/25/19)
- The two Jeffs -- Part II: Guilty plea leads to tragic end (06/25/19)