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CEDAR RAPIDS, Iowa - The National Institute of Mental Health says about one in four American adults has a diagnosable mental disorder. But only six percent of the population lives with serious, persistent mental illness. It's this smaller cohort that constitutes the bulk of the Adult Mental Health and Disability System Redesign we've been hearing so much about in Iowa.
The redesign will change how from a county-based delivery system to a regional one. It aims to equalize the disparity between rural Iowa- with its limited resources to help those with mental illness, and urban areas, that tend to have a lot more choices, doctors and support. But there are other gaps:
- Not enough beds for those needing 24-hour care.
- What to do about that vulnerable time when people aren't living at home, aren't necessarily in school, and might be just experiencing symptoms of a serious mental illness.
- Children: Redesign addresses adults, but Iowa currently sends hundreds of children out of state for care each year. This is very expensive for Iowa taxpayers and difficult for families to have a child so far away. Lawmakers, caregivers and policy expert say the state desperately needs more beds specifically for kids with both intellectual disabilities and mental illness.
But the most pressing need, even before redesign kicks in, is funding the transition. It's turning into a political fight in Des Moines over which counties will get how much. The county in the most trouble when it comes to funding mental health in the transition is Linn County. Three people who call Linn county home shared their perspectives about living with or loving someone who has a serious brain disease:
Life with Bipolar Disorder
Joe Freeman writes poetry, is a graduate from the University of Iowa, and has been in and out of psychiatric hospitals for much of his adulthood.
"The only thing a court commitment means is that something is very wrong and you have to realize that and they're trying to take care of you... if I walked around with all my court commitment papers you'd think I had a book," Freeman said.
But it's been more than five years since he's needed that kind of acute care for when the symptoms of bipolar disorder peak- not sleeping, losing weight, racing thoughts and impulsive behavior.
"I'm balanced now. I'm not low, I'm not high, I'm right in there," Freeman said.
He lives in his own apartment, and a social worker checks in twice a week. A nurse fills his medicine machine every Thursday. His stability is closely tied to how consistently he takes Depakote, Zyprexa and Lithium. "I think I've found my niche of what I like to do, within reason. Not to stress myself out and not have anyone telling me what I need to be doing. I know what to do, I'm religious with my medication, follow ups and things like that," said Freeman.
Poem by Joe Freeman:
Medicated madness creates solitary strife, in a prison of years lost at sea.
60 years past and I realize my life is a mind under lock and key.
Yet the lithium lady captures my brain, she doesn't seem to want to want to let go.
Many years, and more of them insane, I have nothing really to show.
Yet all the madness drains out of me and someday I will surely go
Together with God in harmony I will be buried in peace I know.
A Brother with Schizophrenia
Social worker, Theresa Graham-Mineart, works in the mental health field in Linn County. She also watched her little brother, Mark, struggle with his diagnosis of schizophrenia.
"As he moved into adolescence the voices started and into early adulthood, paranoid delusions. We tried to keep him in the community, but there were times where he wasn't safe. Not to himself and not to other people."
Mark died of natural causes last year, but his sister worries that the mental health redesign will be underfunded in the transition, or there will be fewer beds to help those experiencing acute symptoms.
"We are thankful that he got the treatment that he did, if we were a new family with mental health needs right now, he would have sat on a waiting list."
Helping a Young Son Manage Mental Illness
"We know the feeling of you feel lost, you feel hopeless, you don't know how to help your kid. You want to give them the help they need but you don't know where to go," Matt said.
Matt doesn't want to reveal his last name, or his son's. But he was willing to talk about his son's life with mental illness.
"He's just a sweet kid, just full of life and always asking how things are going and he's starting to really take an interest in professional basketball and football and things like that," Matt said.
His son is nine, he's been to St. Luke's hospital three times for psychiatric problems and hasn't lived at home for four months.
"When the schools call you saying you need to come get him, pretty much daily, you kind of realized we need to figure this out," Matt said.
The diagnosis is anxiety disorder and ADHD, but it's the intense behavior that defies a clinical diagnosis and keeps him at a Four Oaks residential facility where his family can only see him every two weeks.
"A lot of people think 'that kid just needs a spanking.' Spanking was the worst thing possible, It would just escalate him it wouldn't reset his brain," Matt said.
His son takes medications to manage his illness, and the costs for his care at the Four Oaks residential treatment facility is covered under Medicaid. The family's private insurance refused to cover his son after they took him out of the residential facility for three days over the holidays. Matt's family says they didn't do anything against Four Oaks' rules, but the insurance had a rule that said they couldn't take him from the 24-hour care for that long. Matt says he didn't realize they were violating his insurance's policy and now has a bill more than $5,000. Matt is grateful his son qualified for Medicaid once he lost private coverage.
Matt sees progress in his son at Four Oaks, and anticipates him coming home in the summer.
And he offers this advice for others who might be in the same situation: "Just ask for the help, there's a lot of resources out there and we've discovered this. The hard part is finding the resources that tailor to your child or that will best work for him. The more you reach out and ask I think you're going to realize I'm not alone in this."
Resources for Mental Health Support and Information:
National Institute of Mental Health : http://www.nimh.nih.gov/index.shtml
National Alliance on Mental Illness: http://www.nami.org/
Iowa Department of Human Services Division of Mental Health and Disability Services : http://www.dhs.state.ia.us/mhdd/
List of Iowa providers, forms, etc. from Megellan: http://www.magellanofiowa.com/