Editor's note: This story is part of a semester-long collaboration of nine senior journalism students called Project 573. Now in its second year, the project lets students with different journalism backgrounds (print, photojournalism, multimedia, radio, television and strategic communication) work together to shed light on a topic that doesn't get much attention.
This year's topic is mental illness in mid-Missouri. People living with mental illness face a harsh reality. Stigma surrounds disorders, and diminishing resources make help harder to find. While much of society ignores the problems, dedicated individuals work to fill the gaps.
Mental health parity: Requires health insurers to treat mental health services in the same manner as other medical services.
Medicare Improvement for Patients and Providers Act of 2008: This federal law decreases patient’s Medicare co-pay for mental health services Medicare will pay for 80 percent of mental health services by 2014.
Missouri mental health parity law passed in 2004 includes:
- Same coverage for out-patient treatment as with a physical illness;
- Same coverage for residential treatment programs as with a physical illness;
- Same coverage for in-patient hospitalization as with a physical illness up to 90 days;
- This law does not include alcohol and drug addictions.
For more information:
If you have questions about how the state funds mental health services, one of the places to go for information is the Missouri House of Representatives Health, Mental Health and Social Services Appropriations Committee. On the House of Representatives’ website, you can track bills related to mental health. Below are four of the 12 members of the current committee and their contact information.
Rep. Tom Flanigan (R-Carthage), chair, 573-751-5458; Thomas.Flanigan@house.mo.gov
Rep. Donna Lichtenegger (R-Jackson), vice chair, 573-751-6662; Donna.Lichtenegger@house.mo.gov
Rep. Sue Allen (R-Town and Country), 573-751-9765; Sue.Allen@house.mo.gov
Rep. Bert Atkins (D-Florissant), 573-751-9760; Bert.Atkins@house.mo.gov
In the 1960s, when Andrew H. Graham Sr. was diagnosed with bipolar disorder, more than 90 percent of employer-sponsored insurance policies nationwide included some coverage for mental health services, according to a 2011 report on mental health financing by The Kaiser Commission on Medicaid and the Uninsured.
But insurance companies could deny up to 50 percent of treatment cost, limit psychiatry visits to 25 days and limit inpatient services to 30 days. Comparable services for physical illnesses had far fewer restraints.
The Mental Health Parity and Addiction Equity Act of 2008 requires insurance companies that do provide coverage for mental health services to include substance abuse, or chemical dependency, treatment coverage.
In 2010, 49 states had passed legislation requiring insurance companies to offer some mental health benefits.
Bipolar is a mental illness in which the person experiences extreme high and low mood swings that last for a week or longer. It typically runs in families. A major depressive episode occurs in more than 90 percent of people diagnosed with bipolar, but it does not have to be present to be diagnosed, according to the Bipolar Clinic and Research Program at Massachusetts General Hospital.
For more information on definition, symptoms and common medications, see Bipolar in brief on Project 573’s blog.
Other sources: Substance Abuse and Mental Health Services Administration, The Evolution of Bipolar Disorder timeline by Psychiatric Annals, Today’s Caregiver: A Brief History of Bipolar Disorder, Library of Congress: Medicare Improvements for Patients and Providers Act of 2008
An Unsung System tells the stories of these individuals. In upcoming weeks, you will find many of the stories in the Missourian, as well as on KBIA and KOMU. The entire project can be found at www.unsungsystem.project573.com.
COLUMBIA — One day in 2007, Chuck Graham went to his younger brother's apartment and found him on the floor, bleeding.
Drew Graham, who had struggled with the manic highs and dark lows of bipolar disorder for almost 25 years, had been isolating himself from friends and neighbors. He had slipped back into drug and alcohol addiction, and his brother worried that he was a suicide risk.
“I was always ready for getting the call that he’s not here,” Chuck Graham said. It was a fall — not self-inflicted harm — that caused the bleeding, but something needed to be done.
So Chuck Graham, then a Democratic state senator from Columbia, took steps to have his brother, then 40, committed to the Mid-Missouri Mental Health Center for 60 days.
Chuck Graham’s intervention was a turning point in the brothers’ relationship. They told their story over the kitchen table at Chuck Graham’s house one day in March.
Their father also suffered from bipolar disorder and alcoholism throughout his adult life after he was diagnosed in the mid-60s. When Drew Graham needed help managing his own demons, he would turn to his father for support.
But in 2007 the elder Graham was dying from lung cancer, the same sickness that claimed his wife in 1994. As he lay in the hospital, he no longer felt he had the strength to help Drew.
“(Dad) couldn’t handle the stress while he was in the hospital,” Chuck said. “Drew was begging to see him, … and he said ‘no.’”
Chuck had to tell his brother that he might not see their father again before he died. He also had to face another reality: When their father was gone, responsibility for Drew's care would shift to him.
Their father died later that year. Unable to consistently handle his own health care and financial decisions, Drew Graham feared losing control and ending up homeless.
In an act of self-preservation he granted Chuck Graham legal power of attorney, giving him authority to make decisions on his behalf.
“The only thing I had responsibility for before was me and my dog when I had one,” Chuck said, acknowledging his uneasiness at accepting responsibility for his brother’s affairs. “I was not nearly as understanding as my dad.”
Neither brother had married. There were no relatives close by. The only other option was to trust Drew's care to the county.
That option, they decided, was unacceptable.
“It’s not something you plan for, like children,” Chuck said. “This is thrust upon you.”
Chuck Graham, now 47, is a well-known figure in the region, in part because of politics – he served in both the state House and the Senate between 1996 to 2008 – and in part because of the active life he has led from his wheelchair.
A car accident when he was 16 broke his back and left him unable to walk. In the legislature, he was a vocal advocate for higher education, the interests of small-town residents and people with disabilities.
His career in and out of politics has largely focused on physical handicaps; he advocated for the Americans with Disabilities Act of 1990.
But his family’s experience with mental illness – battling societal stigma and navigating a complicated and sometimes indifferent system – also prompted him to share his story to address mental health issues in the legislature.
Growing up with Dad's disorder
When Chuck Graham was 12 years old, most of the other Boy Scouts brought their fathers along on the troop’s camping trip. Chuck Graham went alone, telling his friends his father was too busy.
He was embarrassed to tell them the truth: His father said he couldn’t spend the weekend without his beer.
More than 30 years later, Chuck Graham said it’s hard to tell whether mental illness or alcoholism left a bigger mark on his and his brother’s childhoods.
Although bipolar disorder and substance abuse do not have a known causal relationship, more than 50 percent of people with bipolar disorder engage in substance abuse, according to a report from the National Institute on Alcohol Abuse and Alcoholism. Alcohol and drugs can serve as coping mechanisms and mood stabilizers for people whiplashed by bipolar disorders.
“But as a 12-year-old, you can’t figure stuff like that out,” Chuck Graham said.
Graham Sr. was diagnosed with bipolar disorder in the mid-1960s, about the time Chuck Graham was born. The disorder, known then as manic depression, was not yet officially recognized as a mental illness. People who couldn’t work because of their mood swings or had to be institutionalized did not qualify for government disability benefits.
Graham Sr. moved the family north from St. Louis to the small Mississippi River town of Louisiana, Mo., when Chuck Graham was still young. There Graham Sr. bought and ran a women’s clothing store.
But often his mental illness took over, hijacking his daily routine, distorting his demeanor and undermining his independence.
Graham Sr.’s wife, Joyce Graham, was trained as a nurse and dealt with her own share of personal challenges: She had muscular dystrophy. During her husband’s manic stages, she would take advantage of his restless energy by asking him to take care of bills and other chores. During the down periods, Graham Sr. slept a lot. On those days, Joyce Graham managed the dress shop until her husband could pull himself together.
“She kept the family functioning,” Chuck Graham said of his mother.
Manic episodes would find Graham Sr. awake for days straight, self-medicating with Budweiser and a three-pack-a-day Marlboro habit. Lack of sleep turned into lack of patience. The smallest things set him off.
“It was like walking on eggshells,” Drew Graham said. “You never knew what mood he would be in.”
The Grahams learned how to wait out the low times and manage the manic times. But Graham Sr. was eager to keep his illness a secret from the community. He had his antidepressants shipped to the house so even the local pharmacist wouldn’t know.
“There was a lot of shame, and he didn’t want them to know,” Chuck Graham said. “They didn’t go on talk shows and share (back then).”
With no one to talk to and drug remedies in their infancy, beer became Graham Sr.’s therapist.
“He had been seeing Auggie Busch,” Chuck Graham said.
Different accidents, different paths
The story is well-known by now: In 1981, 16-year-old Chuck Graham drove home from his girlfriend’s track meet and lost control of the car. His spinal cord was severed, and he had to adjust to life in a wheelchair.
As he recovered and acclimated to his new life, the community was compassionate and accepting.
“When he was about to go up on a curb or something, people would be like, ‘Oh, let me help,’ and he was like, ‘No, I got it,’” Drew Graham said. “It was almost like they were trying to be too helpful.”
Two years later, Chuck Graham left for the University of Illinois at Urbana-Champaign, where he studied broadcast journalism and played wheelchair basketball.
Late that next year – less than two years after his older brother’s crippling accident — Drew Graham, then 15, and some friends were on their way to a college basketball game in Hannibal, when the driver lost control and hit an oncoming truck. Drew's spinal cord was damaged but not severed. He would eventually walk again, but over the years the pain in his hips would have him using a wheelchair.
As Drew Graham adjusted to his disabilities, he started relying on drugs and alcohol. He spent less and less time with friends.
“Between that and pot, I was pretty unproductive,” Drew Graham said.
But within a year of his accident, Drew Graham realized something else was wrong. It was hard to get out of bed in the morning. It was harder and harder to control his emotions. His parents drove him to the psychiatric unit at the Barnes-Jewish Hospital in St. Louis. Drew Graham was diagnosed with bipolar disorder and admitted for six months.
Drew Graham was prescribed five different antidepressants during his stay, trying each for 30 days while tracking his moods to test their effectiveness.
The drugs leveled his erratic moods, but they were expensive, and the side effects could be brutal. He felt tired and lethargic most of the time. He didn’t like feeling as if his emotions were blocked.
After his release, he moved back home and began making a twice-a-month, 90-minute drive from Louisiana to the nearest psychiatrist. By then, the government had recognized bipolar disorder as a mental illness. Drew Graham qualified for Medicare because of his physical disability, so some of the cost of his mental health treatment was covered.
Drew Graham managed to graduate from high school on time, despite his illness. He attended two small colleges – he wanted to avoid the temptations of bigger party schools – before earning a bachelor’s degree in history education at what is now Hannibal-LaGrange University.
Entering the world of advocacy
Despite their shared history and experiences, the brothers grew apart after high school.
Chuck Graham graduated with a journalism degree in 1987 and began a career with a series of agencies for people with disabilities. But politics had been a passion since he was 11. It was his way of trying to make a positive impact on the world around him. He was invited to the White House for the Americans with Disabilities Act signing in 1990.
A year later, he returned to Missouri, where he was the Missouri coordinator for the ADA Project, which provides assistance and training for businesses. He kept the position until he was elected to the Missouri House of Representatives in 1996 at age 31.
Meanwhile, Drew Graham made his own way in the world of advocacy. In 1993, he joined an advisory board for Missouri Protection and Advocacy Services as a volunteer representative of those who receive mental health services. One initiative he championed was in support of shuttle services for residents of small towns traveling long distances to get psychiatric care.
Chuck Graham made his base in Columbia. Drew Graham stayed closer to home in Louisiana, where he could rely on his parents in times of crisis.
But for all the geographic and emotional distance, Chuck Graham carried his brother and father with him. In the legislature, Chuck Graham lobbied on behalf of mental health bills, using his story to illustrate impacts of mental illness on families.
When he was in the House, Rep. Vicky Riback Wilson, D-Columbia, and Rep. Tim Harlan, D-Columbia, worked on passing a mental health parity bill that required equal insurance coverage for mental health services as any other type of medical service. Chuck Graham helped gather votes.
Chuck Graham said the legislative debates over mental health issues often came down to cascading ideological differences. Those against mandating equal coverage said it was not the role of government. Those who did not see social services as a budget priority did not see mental health services as a social service priority. Mental health often ranked last on a list of concerns.
“I think a lot of people (in the legislature) just haven’t had personal experience with it,” he said. “If you’ve got personal experience, it certainly changes the dynamic.
“They understand a ramp. They understand handicapped parking. They understand service animals for people who are blind. But they can’t see a condition. They don’t understand it, and they tend to be more discriminatory toward those individuals. So (mental health) budgetary items fall to the wayside because people don’t understand it.”
Learning to manage
Drew Graham’s fall and re-hospitalization in 2007 proved a turning point. It took two years of careful medication and a series of moves — from the hospital to a nursing home to outpatient care — until he learned to manage his disorder. His last visit to his psychiatrist was three years ago, but he still gets medication from his primary physician.
He is careful to avoid stressful situations that could set him off.
“You plan your life around triggers,” Drew Graham said. “People with bipolar try not to get their expectations up too high, because if the outcome is low, they take it harder than most, and it can trigger depression.”
He keeps life simple and quiet. He shares a house in Columbia with Chris Hurt, his part-time caretaker. Chronic hip pain has him using a wheelchair again. Arthritis in his shoulders makes movement difficult. He spends most days in his room watching television from his hospital bed. The walls hold MU sports posters and a dry-erase board calendar noting his doctor's appointments.
He makes his own meals and attends to most of his personal needs. Hurt runs errands for Drew Graham, takes him to doctor’s appointments and is there if he falls or needs extra help.
He still tends to distance himself from his brother, especially if he feels a manic or depressive episode coming on. But when he feels up to it, Hurt takes him to visit Chuck Graham, who lives about two miles away.
“They (Chuck and Drew Graham) talk a lot more than they used to,” Hurt said. “Chuck stays pretty busy trying to handle his and Drew’s life.”
Chuck Graham now works as a consultant to the Americans with Disabilities Act Center and does private consulting for firms dealing with disability issues. Both brothers say they are closer now than they’ve ever been.
“We see what the other has to deal with, and we are more tolerant,” Chuck Graham said. “There’s a lot fewer F-bombs.”
They work together to make financial and health decisions for Drew Graham. They are having hard but necessary conversations as Chuck Graham takes on a larger role in Drew Graham’s care. They understand their need for support from the only family they have left.
“Patience, I think it was the hardest adjustment I had to make,” Chuck Graham said. “They say you lash out on the ones you love because they are the only ones around.”
Listen to an audio story on KBIA about Drew's experience in dealing with stigma from his physical and mental disabilities.