Labor Day weekend 2004 is burned into the memory of Bob Spada of Cleveland. That was the time when the former Ohio state senator learned his adult son, Jim, was suffering with bipolar disorder. The condition causes patients to alternate between periods of high energy and activity and stretches of lethargy and depression. Fortunately, medications are available to treat bipolar and balance the mood swings.
Now the president of the NAMI Ohio board of directors, Spada was the keynote speaker this weekend at the Ray of Hope event and anniversary celebration of NAMI-SSW. He represented Ohio District 24 from 1999-2008 and sponsored SB 116, the Mental Health Parity law. Gov. Bob Taft signed the bill into law in 2006. It requires insurance companies to cover mental illnesses at the same level they cover physical injuries and diseases.
Spada's talk had a recurring theme: "Friends tell friends."
Knowing people in the gathering also had personal reasons to advocate for the mentally ill, he felt like he was among friends. He described his experiences with his son, which began with a late Sunday call from Amy, a woman in Dallas whom Jim had gone to visit.
"She called to tell me they were taking him to the hospital. They thought he was on drugs," Spada said.
Soon after, the phone rang again. The younger Spada spoke with alarm about having a blood test to see what might be wrong. Eventually, the hospital staff did get a sample. It did not show drugs in Jim's system.
Spada said some people in attendance may have gotten similar late-night calls about loved ones in trouble.
"I really didn't know what to do. What do you do when you get a phone call your kid's in Dallas, Texas, and needs help?" Spada said.
He booked a flight the next morning. In addition to the worry about his son, Spada and his bag were searched at the airport. He did not know how many days he would be gone, where he was going to stay or what condition Jim might be in.
"It was one of those times where you just do what you have to do. I got to Texas and stayed with the parents of Amy," Spada said. "They even loaned me their car. I drove to the hospital ... and got in and saw my son. I was actually afraid of him."
Jim demanded, "Get me out of here," but Spada said he did not want to do that alone. He found it disturbing to be afraid of his child. In a few days, father and son returned to the family home in Cleveland. Having made many contacts with hospital officials and health care professionals in the area, Spada received numerous calls from concerned people who heard what happened.
"The thing that really struck me was how all of these people came to our aid," Spada said. "It was heart warming to have people call you up, some of whom you don't know, and say, 'I want to help you.'"
The next day, Spada and his son had an appointment with Dr. Pedro Gonzales, head of the mental health/psychiatric department at University Hospital in Cleveland. He explained bipolar disorder and its treatment, which included medication Jim probably would have to take the rest of his life.
Shortly after the diagnosis, Spada got involved with NAMI to learn more. He said it is the only organization he knows of with "mental illness" in its name. He also wonders what might have happened if he had not been legislator with a network of people to advise and support him. Many people are afraid even to admit having mental illness in a family member, so they may not seek help.
"I still have trouble figuring out what to do and where to go. Even though Mary and I have taught the Family to Family classes and done other things, sometimes you're still not quite sure what to tell people," Spada said.
As he learned more about brain disorders, Spada discovered the chemical, dopamine, plays a role in Parkinson's disease and in schizophrenia and bipolar disorder. Parkinson's results from too little dopamine production, while the other two are caused by having too much.
At the time, Parkinson's was given full health insurance coverage, but Ohio law said policies could pay as little as $500 for treatment of schizophrenia and bipolar.
Spada knew the cost of psychiatric care, and he knew $500 would not go far for a lifelong condition such as Jim's. It didn't seem fair for the level of a single brain chemical to be treated so differently in the eyes of the law, he said.
"Tell me if that's not discrimination against somebody who has a mental illness," Spada said.
With that knowledge, he decided to draft legislation to change the law in Ohio. Spada asked Jim whether he would allow him to share some of their story when the bill was introduced. Jim gave permission, but Spada said speaking to the Senate committee was one of the most difficult things he had done.
"I don't know how many times I had to stop talking because I got choked up. It was quite a few, quite a few," Spada said.
He was pleased for the outpouring of support for the bill from NAMI and many other organizations, especially when other politicians had worked on the parity issue in the past with no success. There was a fear insurance rates would rise if companies were mandated to cover mental illnesses.
At the time the bill was in discussion, Spada was not sure Taft would even sign it. Despite the bill's passage, Spada said the stigma of mental illness has not disappeared. People still hesitate to talk about it.
"The only people that'll come up to you and talk about mental illness are those who know it's safe to talk to you," Spada said. "According to the surgeon general's report, stigma is the most formidable obstacle in the area of mental illness and health. Between 50 and 60 percent of individuals with a mental health challenge do not get treatment because of the stigma."
That stigma also can affect one's education, relationships, employment, housing and medical treatment, Spada said.
In one survey, one in three people reported difficulty getting a job when they were known to have a mental illness. Job offers even have been rescinded when a company ran a background check and discovered a hospitalization or some other crisis that happened in their family.
Those with mental illness may die 25 years earlier than their "normal" counterparts. Spada said it is not mental illness itself that shortens lives but the complications mental illness can create for a person.
"In some cultures, they believe that mental illness reflects poorly on the entire family, diminishing marriage and economic prospects for other family members," Spada said.
In the United States, people with mental illness often are regarded as dangerous; however, Spada said statistics indicate the mentally ill are more likely to be victims of crime rather than perpetrators. Families, community networks, churches and other organizations must work to eradicate the stigma, Spada said. He encouraged everyone to take the Family to Family class if they haven't done so. It covers all aspects of mental illness, as well as advocacy.
"This period in our history is a really significant time for health care," Spada said.
Reading from a news report, he mentioned Gov. John Kasich's proposal to extend Medicaid coverage in Ohio to a larger portion of the population. A controlling board must approve the expenditure of federal funds to pay for expansion. That board was to meet Monday to consider Kasich's request.
"One of the things that has been a very significant challenge is that our friends in the legislature just can't agree on how this is done," Spada said. "Nobody expected this governor to come on as strong as he has in favor of the people that we love and care about."
Spada said NAMI-SSW was founded in 1988, a time when state mental hospitals were changing their policies to let clients live in the community instead of in an institution. Although Spada said it was "a great move," the community support services did not follow the release of those individuals into the community.
He urged everyone to contact legislators and make them aware of their concerns.