Father not alone in frustration over lack of mental health care in Kansas
- on October 12, 2012
Enterprise — Michael Rutz is filled with anger, frustration and sadness. The day before, he attended the funeral and graveside services of his only son, Daniel, who died at age 28 after battling mental illness.
Daniel suffered from attention deficit hyperactivity disorder, bipolar disorder, major depression and anxiety. Rutz said he relied on prescription drugs to get through each day.
“He was always trying to find a way where he could just be at peace with himself and deal with life around him,” Rutz said. “He always said, ‘I want to be normal.’”
During the past two years, Daniel was in and out of two of the state’s three hospitals for the mentally ill —Osawatomie State Hospital and Larned State Hospital — 12 times. Some stays were three days and others were three weeks, and then he was referred to various outpatient programs. Before his death on Sept. 24, he was seeing a counselor about twice a month after being released from the Osawatomie hospital in August.
“We have no long-term care in Kansas where we can work with people,” Rutz said. “We give them some medication and we kick them out. There’s nobody to work with them.”
State mental health advocates say that, unfortunately, this father’s story is common. They receive at least 100 calls a year from people with similar frustrations.
“Long-term care for many people is an evasive concept. For many it’s the community jail or the streets or the prison or the revolving door,” said Rick Cagan, executive director of the Kansas chapter of the National Alliance on Mental Illness, or NAMI.
He said one in 17 adults experiences a serious mental health disorder, like major depression, in any given year, and the services available to help treat them are limited.
Amy Campbell, lobbyist and coordinator for the Kansas Mental Health Coalition, said the current system is so underfunded that it is just trying to stabilize residents in crisis instead of providing all of the community supports that are needed for individuals to get better.
“This is one of the reasons why diagnosis of a serious mental illness is often kind of a death sentence in the sense that they won’t live a normal lifespan. These folks often die much younger than they ought to, and it’s terrible,” she said. “When we are spending all of our time trying to plug the holes of the immediate crisis, how are we able to work to improve our overall system of care?”
Rutz, 57, an Army veteran and special education teacher at Abilene High School, talked about his son’s mental illness and the multitude of obstacles he faced in trying to get him help during a two-hour interview at his home in the small central Kansas town of Enterprise, where he serves on the city commission.
“Daniel loved to go bicycling, he loved the outdoors and liked to go fishing and hunting,” Rutz said. He left the living room and came back with a collage of photos that he had framed in memory of his son. They showed Daniel as a baby, playing as a boy and smiling as a teenager and adult. These were his good days.
Daniel was born in Manhattan and grew up there with an older and younger sister. Rutz described him as an active boy who liked to get into mischief. He recalled touring a castle while on a family vacation in Austria and Daniel, about age 7 at the time, wanted to get in a 200-year-old canon and then he got stuck.
“We thought we might have to cut him out of that cannon, but we finally got him unwedged and out of the cannon,” he said, with a smile.
As a teen, his dad said, he started hanging out with the wrong crowd and drinking too much alcohol and using illegal drugs like marijuana. He was in and out of treatment for substance abuse. He attended Manhattan High School through his sophomore year and received a General Educational Development degree. Then he worked at a number of places, including Fort Riley, Solomon Corp. and Great Plains in Abilene.
“He was a very good worker and could do just about anything, but he had a hard time keeping jobs because he had a hard time getting up out of bed to go to work,” Rutz said.
At age 21, Daniel had a son, Ryan, with girlfriend Cassie Pemberton, whom he met in grade school.
Pemberton, 26, of Shawnee, said they had an off-and-on-again relationship because of his mental illness — something she admits she just couldn’t understand.
“When Ryan was born, I had a C-section and he did everything for the first week. Daniel was always loving and caring and a good guy when he could be there,” she said.
Through his 20s, Daniel’s depression and anxiety became severe. He no longer wanted to be around people and would sleep a lot. That was the main symptom, his family said, but sometimes he couldn’t sleep or eat. He depended on prescription medications to get him through each day, and his dad became an advocate for him — he had to.
Rutz called legislators and various treatment centers in seek of help for his son. With the help of U.S. Sen. Pat Robert’s office, he was able to get his son on disability and the Medicaid program. Daniel received $900 a month — not enough to cover his treatment, housing and food. He had to spend $2,800 every six months before he was eligible for free care for medicine or a doctor’s appointment.
When it came to finding an inpatient treatment facility, Rutz said they either cost more than $15,000 for a 30-day stay or they didn’t accept Medicaid.
“I’ve talked to many people, from CEOs all the way down to factory workers, who have gone through this type of situation — frustrated, had to mortgage their house in order to send their kids to an inpatient care facility and they only last 30 days,” he said.
During the interview, Rutz would refer to two huge folders that contained documents about Daniel’s treatments, all of which were running together like one big nightmare. Every once in a while, he would thumb through them for information.
He said Daniel often went into state hospitals because he was under- or over-medicated and as a result would be out control. So, Rutz would either meet him in or take him to a hospital emergency room where he would be screened. If the screeners thought he was a threat to himself, they would send him to a state hospital. If not, they would give him medication and send him home. If he was sent to a state hospital, he would be stabilized with medications and then referred to a center for outpatient treatment. But, Rutz said his son was never stable enough to be on his own. He couldn’t be trusted to get that outpatient care, and he desperately needed psychological counseling and someone who could help control his medications.
“I am not saying that Daniel wasn’t at fault for this because it was part of his responsibility to cooperate, but we did not do a very good job of helping him,” Rutz said.
Rutz said half of the time his son would seek help on his own and other times he had to go involuntarily. Because Daniel was an adult, there was only so much Rutz could do, which was frustrating. He did have control over Daniel’s finances and tried to monitor his medications so he didn’t take too much. Rutz said although his son signed a release of information, some doctors were better about sharing information than others.
“The problem is Daniel, like others, thought he could control the medication on his own but he couldn’t,” Rutz said. “We butted heads a lot. We disagreed a lot, and he thought I was controlling him too much.”
Rutz found an apartment for his son in Manhattan, and that’s where he was living before his last hospitalization. Rutz said they called each other every day. If his son didn’t call, he would ask Daniel’s mother, Ulrike Rutz, or his sister to check on him.
“If Daniel didn’t live in my house, I never knew when that phone call was going to happen,” Rutz said. “He would call me and always tell me he loved me. He needed that reassurance. He was a very sensitive individual.”
Cagan, of NAMI, said his nonprofit agency has long talked with state leaders about the lack of continuum care for people with mental illnesses. He believes most people with serious mental illness can live independently as long as they get the treatment and support that they need at the community level.
The problem is that Kansas has cut $38 million in funding for mental health services during the past four years, according to a report “State Mental Health Cuts: The Continuing Crisis” that was released last November by NAMI. That funding was for Mental Health Reform grants, Medicaid patients, a Community Support Medication Program and psychiatric inpatient screenings, among other services. Kansas ranked ninth in the nation in cuts to funding for mental health services.
Cagan said he would like to see more community hospitals providing “crisis or stabilization” beds, where patients can have a chance to be safe and “chill out” before everyone determines whether the person is going home or to a state hospital. He said it’s a lower cost option than shipping them to a state hospital or sending them home too quickly where the situation may worsen to the point that law enforcement has to get involved.
Additionally, he said there needs to be more intensive treatment options. Such options could include programs where case managers check in with patients daily, offer counseling more than once a week and/or provide peer support similar to a sponsor in Alcoholics Anonymous. “The formula for recovery is complex and has to be individualized,” he said. “Too often, the public and health centers and doctors and families think treatment equals a prescription, and that’s very shortsighted in our view.”
Another problem is state hospitals are underfunded at a time when they are needed most. He said more people are seeking treatment because the stigma isn’t quite what it once was and because symptoms tend to flare up during tough economic times. “The state hospitals have had huge issues with being over census, so patients are being released without being able to be supported at the community level. The pressure is there to push them out the back door because there are so many waiting at the front door. Now, the state will deny these claims, but I think the evidence is there,” Cagan said.
Campbell, of the Kansas Mental Health Coalition, said access to mental health services isn’t just a problem for the uninsured, but for everybody because insurance dictates how much treatment someone can receive. Too often, it’s not enough.
Campbell said evidence shows that people with mental health issues are more likely to succeed and more likely to be weaned off medications that may have very serious side effects if they are engaged in cognitive behavioral therapy and peer support groups. She’s lobbied for such changes under the state’s new program for Medicaid, called KanCare, that’s set to begin Jan. 1.
“It would be advantageous for the Medicaid program because that individual would be more likely to achieve a better level of functioning and their need for expensive medications and state hospitals would be less,” she said. So far, Campbell said she hasn’t received an answer about whether the program will include all three types of care. Her fear is that the three companies hired by the state to run the Medicaid program will put more restrictions on accessing care, but she’s hopeful that won’t be the case.
Like Cagan, Campbell also believes more services need to be added at the community level. She said the state lacks the support that a patient needs once he or she gets out of state or private hospital. “There are really no good options for supervised care or residential care within communities and so we find ourselves trying to fit the people to what’s available instead of getting the treatment to the person,” she said.
Daniel’s last hospital stay was July 26 through Aug. 10 at Osawatomie State Hospital in August. Once released, he lived with his dad who was trying to get him treatment through a Central Kansas Mental Health Center.
Rutz said the last time he saw a counselor was Aug. 22. About Sept. 17, he saw a doctor who refilled his medications for 30 days. Rutz said Daniel was suppose to have seen a counselor at least twice a month, but he didn’t and no one followed up to ensure it was done.
“He was having a hard time with depression and staying in his room more,” Rutz said. “I encouraged him to get out and do something — bike, see people, go to the gym with me.”
On Sept. 23, Daniel traveled to Shawnee with his girlfriend and his son. They had a great time, Pemberton, the girlfriend, said. They went to a store to rent movies and Daniel ended up playing around on a skateboard that was among some toys. That night, he read to his son and gave him a necklace. The next day, Pemberton went to work and when she came home Daniel was still in bed. She didn’t think much of it because it was typical for Daniel. A while later, she checked on him again and realized something was terribly wrong. She called 911 and performed cardiopulmonary resuscitation, but it was too late. While the official cause of death has not been determined, the family believes it was an unintentional overdose of prescription medications.
Pemberton said Daniel talked about his illness with her the night before and thought he might need another hospital stay because it provided more structure. “He knew that he needed help, but I don’t think he knew how to get it,” she said.
Pemberton’s sister made the agonizing call to Daniel’s parents and she reached his stepmother, Renauda.
Rutz said, “It seemed like it took her an eternity to tell me that Daniel had died.” The tears began to fill his eyes. “We knew it could have been possible. We dreaded that call.”
At first, he said he was filled with rage and he bruised his hand by punching a wall.
“I was upset because,” he said and paused, struggling to get the words out. “You go back and you flash in your mind, “Did I spend enough time with him? Was I there enough times? Could I have done more?”
Rutz said he and his wife jumped in the car and rushed to Shawnee because he wanted to hold his son one last time, but he was too late. Through tears, he grabs a cross that’s on a necklace he’s wearing. “This is a cross I got him in June that says “Love dad,” he said. “It was for his birthday.
Pemberton said Daniel and his dad were close. “He did everything for his son. There is nothing more that he could have done,” she said.
One year ago, Rutz started a new group in Abilene called the “Family Support Team.” The group meets quarterly and involves agencies like the American Red Cross, Kids in Crisis, the police department, the sheriff’s department and a food bank. The group had its first “Family Resource Day” on Sept. 29 and about 100 families attended.
“I started this because I knew how difficult it was for me to get answers. It wasn’t easy for me to track down disability,” Rutz said. “I think information is very powerful. The more you know, the more you can help yourself and your family.”
MENTAL HEALTH RESOURCES
• Kansas chapter of the National Alliance on Mental Illness: 800-539-2660 or namikansas.org.
• Kansas Mental Health Coalition: 785-969-1617.
• Association of Community Mental Health Centers of Kansas Inc.: 785-234-4773 or acmhck.org.
• Keys for Networking Inc.: 785-233-8732 or keys.org.