“TIM HAS BEEN having auditory hallucinations including command voices which direct him to hurt others,” was the key statement that got Tim admitted to the small community psychiatric hospital about an hour away from the boarding school.
The psychiatrist there—who was also the staff psychiatrist at the school—wrote that Tim’s “most recent intense hallucination was when he was in a conflict with staff and when another peer was restrained on the unit. He indicated that he heard voices indicating that he should jump in and stop the restraint.” When I first read that passage, I didn’t doubt that Tim was hearing voices. I just wondered if they were commanding Tim to hurt others or to help them.
On admission, the psychiatrist observed that Tim’s symptoms could be related either to bipolar disorder or schizoaffective disorder. His recommendation was that Tim be started on Zyprexa, an “atypical,” or second-generation, antipsychotic used to treat both of these.
A psychologist also assessed Tim. He wrote that Tim “was willing to answer factual questions about himself and his circumstances but was unable or unwilling to discuss his current thinking and feelings. Also, he was vague in describing his reasons for hospitalizations and would not talk about his reported hallucinations.”
He reported that during the interview, Tim attempted “image management” and a “facade of control,” which the psychologist interpreted to mean that Tim was hiding symptoms of his illness. He indicated, however, that he believed that he had enough information from Tim to summarize Tim’s psychological state.
The psychologist did not find Tim to be suicidal. Instead, he wrote, Tim was “under considerable situational stress,” which compounded a “capacity for suicide.” He also found Tim to be depressed and despondent, calling him “apathetic” and “pessimistic regarding his ability to control his situation.”
He observed that “Tim’s reality testing is poor” and that this resulted “in Tim’s frequent failure to anticipate the consequences of his actions.” He added that Tim reported “feeling lonely, misunderstood, and mistreated,” and that “there is some evidence from testing that the auditory hallucinations reported by staff are present.”
Finally, he observed that Tim “is in a nearly chronic state of pique that extends beyond an aversion to authority and encompasses most of his life space…. He may even choose to make those mistakes if it means frustrating those in positions of authority.”
The psychologist recommended an antidepressant, an antipsychotic if the antidepressant did not work, psychotherapy, and a return to the boarding school. He cautioned that illicit substances “are particularly dangerous for him and they would almost certainly cause irreversible psychological damage.”
I had mixed feelings about the psychologist’s evaluation. On the one hand, his conclusion that Tim was unable to anticipate the consequences of his actions was consistent with everything I had experienced with him. Also, the determination that Tim felt lonely, misunderstood, and mistreated was consistent with how Tim had described himself on more than one occasion. On the other hand, his seemingly carefully chosen words of “a capacity for suicide” fell short of describing Tim as suicidal, and the “situational stress” that “compounded” the “capacity” for suicide might only be compounded further if Tim returned to the emotional-growth boarding school.
Also, his and the psychiatrist’s reports seemed to disagree on an important point of treatment. The psychiatrist seemed convinced that Tim’s behaviors were signs of serious mental illness requiring an anti-psychotic drug, but the psychologist seemed to be recommending the use of an antidepressant first. I did not know which one to believe.
Tim settled into the hospital routine, and his symptoms seemed to diminish almost immediately. The environment was less stressful for him than the school. There were no more “raps,” just regular group and individual counseling sessions, and a much simpler routine consisting of meals, counseling, quiet time, and recreation. But, as best I could tell, there was still no educational component.
After being apart from Tim for four months, I was looking forward to seeing him so I could form my own judgments about how he was doing.
Before I left I asked both the school and the hospital to consider allowing Tim to have a day pass to go back to the school with me when I visited. I explained that allowing him to be my guide would give Tim an opportunity to take some ownership and control of his space there. They both denied my request, each blaming the other. So I never actually got to see the inside of the buildings where Tim was living and being educated. Rachel e-mailed me that the hospital would not approve this. The supervisor “believes that it would not be appropriate for Tim to come back on campus to show you around this weekend because he has not yet been cleared for a campus pass,” she wrote. And my contact at the hospital e-mailed me that the school didn’t think Tim should be back on campus so soon. Neither one seemed aware of the other’s response.
I knew that I wanted to bring Tim home as soon as I could. Over the past four months, he had been bounced between the school, the wilderness program, and the hospital, and the school had not delivered on the promise it made to me when he was admitted that it would work closely with Tim’s Connecticut clinicians and educators to develop a meaningful plan for him. His educational program was nonexistent, he wasn’t making friends, the rap session approach was causing him enormous stress, and he was exhibiting symptoms of serious mental illness. And it was costing us a small fortune. I also didn’t think the school or the hospital was being entirely truthful with me about why Tim was there. On a day-to-day basis, the hospital was being as tight-lipped about Tim’s condition and treatment as the school had been. Although the hospital knew that I had traveled across the country to come there, nearly everyone, including the psychiatrist, declined to meet with me. I had never before experienced clinicians who were unwilling to talk with me about my son’s treatment. It seemed clear that they did not trust me, and I knew that I did not trust them.
There were risks associated with Tim’s returning to Connecticut without a program in place. The most significant one was that he might refuse treatment and begin self-medicating again. So I wanted to determine if there was a program we might use as a transition to living at home with Linda or me. This could be followed, I hoped, by regular community-based mental health and substance abuse counseling.
But Linda was not yet ready to throw in the towel on the boarding school, which told her it would willing to take Tim back after his discharge from the hospital. Even so, I doubted that the school could manage someone with Tim’s clinical profile. And I suspected they felt the same way. Tim’s “situational depression” was a huge potential liability for the school should anything major go wrong after he returned.
As of mid-August, there was still time to decide. The hospital was in no hurry to discharge Tim. It kept asking for additional inpatient treatment days from my insurance company and talked only about moving Tim to an intermediate care unit if and when the insurer determined that he no longer needed his current level of care.
When I finally arrived at the hospital after an all-night trip, a social worker was the only one who made herself available to meet with me. Even that meeting almost didn’t happen. Just before I left Hartford, I received a fax telling me that “protocol allows for parent/patient contact during therapy sessions only, except under ‘extenuating’ circumstances.” The inference was that I might not be allowed to see Tim when I arrived because this had not been approved in advance. The psychiatrist also wanted me to “allow” the social worker to inform Tim of my visit, the implication being that if both she and Tim did not agree to the visit, I might not be allowed to see him. I ignored the fax, and they made the visit as uncomfortable for me as possible.
I first met with the social worker in a private office. She seemed pleasant enough as she reviewed Tim’s progress during the two weeks he had been in the hospital. Then she told me the rules for our visit. There were no visiting rooms available. And because of “confidentiality rules,” I would not be allowed to go anywhere in the hospital with Tim where I might see other children, including the indoor and outdoor recreational areas and the dining room. Despite those confidentiality rules, however, our own visits would be in a small public reception area, where our conversation could be overheard by anyone down the hall. We were told to enjoy ourselves.
I stayed for eight hours. Tim looked good. His eyes were bright, and he had been eating well for two weeks. He showed little or no anxiety, having responded well to the hospital routines. He was animated and happy. He told me stories about his life at the school, the wilderness program, and the hospital, and I told him stories about mine. We talked politics and reminisced about his childhood, our trips together, our drives to morning therapy sessions with Imus on the radio, and family picnics and parties. He wanted the details of Ben’s, Lizzie’s, and Larissa’s lives, and I updated him about what they were all doing as they prepared for the school year. We discussed at length my planned move to Austin the following year. I was going to sell our house in the spring. Tim said he would miss the woods in our backyard, but he had visited Austin with his mother one time, liked it, and looked forward to seeing it again. We laughed about the Schlitterbahn T-shirt he had bought when he went to the well-known Texas water park. He had worn the shirt to his previous high school one day, and because no one there spoke German or knew much about central Texas, they worried that “Schlitterbahn” was some coded drug message. Tim laughed when he recalled this.
When I told him that the boarding school had never delivered the letter I had written to him about my engagement to Pam, he shook his head. “See what I mean about them?” he said. He reminded me of his warning that he didn’t think the school was worth the money we were paying for it.
There was a normalcy to our conversation that was common to most of the conversations I had with Tim. When he was not in an acute phase of his mental illness, he was charming, happy, and sociable and enjoyed visiting, talking, and laughing. It was good for me to see him this way. We continued talking until five o’clock, with just a brief break for me to run out and pick up some sushi for lunch. Then I was told that I needed to leave so that Tim could have his supper and begin his evening routine. I told him I’d see him the next day for a few hours before going back to the airport, gave him a hug, and drove back to my hotel.
I got up early the next morning and drove to the school. I stayed only a few minutes. It was a quiet Sunday, and the campus was situated in a beautiful mountain setting. But in late August it also felt a little dreary, isolated, and cold. The campus was deserted, and there were few signs of life. No one said hello to me.
Then I visited with Tim at the hospital for another three hours. Our conversation was more subdued than it had been the day before. We were a little talked out and more focused on the here and now. As I got ready to go, I was certain I was going to get him back to Connecticut as soon as I could. But I did not want to get his hopes up too soon, so I encouraged him to try to make his stay a positive one. We hugged, telling each other “I love you.” I went out to the parking lot, got into the rental car, and drove myself back to the airport.
A few days later, the hospital decided that Tim was no longer in need of acute inpatient hospitalization and moved him to a lower level of care. Tim stayed there for three more weeks, when my insurer decided that further treatment was unnecessary. He was discharged, and if he had a detailed aftercare treatment plan, I never saw it.
When Tim was released from the hospital, he was taking Zyprexa for bipolar disorder and “possible” schizoaffective disorder. He returned to his emotional-growth boarding school, and once again Rachel tried to be upbeat. She e-mailed me: “Tim has grown so much that we had to get him new jeans the other day. He could no longer button the ones he had when he arrived! You’ve seen him recently, but he almost seems to grow on a daily basis. He tells us that he is happy here, but he is quite routinely forgetting to go to the nurse to get his meds. We are working on a behavioral sequence plan that will help him organize to remember meds, as well as daily bathing, dealing with dirty clothes and attention to his dorm space cleanliness.”
The return to the school’s routine, however, with its regular confrontational “raps,” was not what Tim needed. The behavioral sequence plan apparently involved other students getting on Tim’s case in raps about his messiness and lack of cleanliness. At first, he was verbally confrontational in return. Then the situations escalated into minor scuffles. A week later, Tim was involved in a major fight, which resulted in another teenager breaking his collarbone. When Rachel gave me this news, she reported that Tim was “on the cusp” of being asked to leave the school. He was argumentative and confrontational, and increasingly he couldn’t control his temper.
The next day, Tim was in crisis again. He was acting aggressively and couldn’t calm down. He was readmitted to the hospital, and my insurer certified the stay. I had a long conversation with a case coordinator at the insurance company after this. She explained that Tim’s bipolar diagnosis qualified him for extended mental health benefits under the Connecticut state parity regulations in place at that time. Otherwise, she reported, Tim would already have exceeded his lifetime cap on mental health benefits. He was only fifteen years old.
She explained that after reviewing Tim’s history, the insurer believed that Tim’s current needs could only be met in an inpatient setting. The insurer did not see a return to the boarding school as a viable option. I agreed, and I learned that day that the hospital in the northwest had come to the same conclusion. The insurer’s case coordinator suggested that we transfer Tim closer to home, and she gave me a list of programs that she believed might be able to meet Tim’s needs.
Linda and I began the process of trying to find an inpatient program that would admit Tim, but beds were in short supply. We asked the hospital in the northwest to check into the availability of beds in several Connecticut hospitals. Tim found out about this and grew excited about what he hoped was an imminent return to Connecticut.
In late October, we received news that a hospital just a few miles from our home would have a bed for Tim if we could wait three weeks. The insurer agreed to cover Tim’s stay in the northwest until the bed in Connecticut opened, then cover his stay at the hospital in Connecticut. This was great news. I spoke with the Connecticut hospital’s admissions director and began to work out the arrangements for Tim’s admission.
In the meantime, Tim was transferred to the intermediate care unit at the hospital in the northwest. He was a little stir crazy waiting to leave, but for the most part he managed the routine—eating, watching television, attending group and individual counseling sessions, and getting a little exercise. He made no friends and was occasionally involved in scuffles, but so far as I knew there were no major incidents.
A couple of weeks later, I was disappointed to learn that the bed in the Connecticut hospital had fallen through. We discovered that none of the other hospitals in Connecticut had a bed for Tim, either. Linda and I redoubled our efforts, but before we were able to come up with anything, the insurance company found a placement. It was a program in western Connecticut, about an hour from our homes. I knew the program from my time in the state legislature. I liked it, but neither Linda nor I thought it was right for Tim. I understood it to be primarily a drug treatment program, not a mental health program, and Tim was not using drugs at the time. But I was assured by both the insurer and the program that this was a “myth” that the program had been “trying to debunk” for ten years, so they made plans to approve a stay for him there.
The insurer’s plan was for Tim to start in the residential treatment component and then transition either to the intensive outpatient component or possibly a partial hospitalization program at a different facility (should a bed become available) that specialized in mental health treatment. When I told the insurer’s case coordinator that the drug treatment program did not offer the round-the-clock supervision I felt Tim needed, she dismissed my worry.
In fact, she was so eager to place Tim there that she wanted him released from the hospital in the northwest on the day before Thanksgiving. I had to explain that I could not get flights for Tim and me on such short notice on the busiest travel days of the year. She relented and agreed to delay his discharge until after the holiday. I was to find out later that the insurer denied this portion of Tim’s stay because it was not medically necessary. This was mental health coverage in a nutshell for me.
I booked a flight to the airport closest to the hospital on the Tuesday after Thanksgiving and a return flight to Connecticut for Tim and me on Wednesday. The new program expected Tim on Thursday. When I arrived at the hospital in the northwest I was shown to an office where a staff person gave me a copy of Tim’s discharge plan and some papers to sign. No one else met with me or came to wish Tim well. We were shown to the door as if he were being released from jail. He and I looked at each other and agreed that it was long past time to go.
Tim had arrived in the northwest in April 2000 to attend an emotional-growth boarding school that promised him a comprehensive academic, social, emotional, and physical growth experience. He left a little over seven months later having attended the school for a total of ten weeks. He earned zero academic credits, made no friends, and regressed emotionally. He stopped taking his medications and acquired new diagnoses of bipolar disorder and possible schizoaffective disorder. He came back home with no community-reentry or long-term treatment plan in place. He had technically exhausted his lifetime mental health benefits.
On the plus side, Tim had scaled a fifty-foot wall (though no mountains). I had parted with about $10,000 and felt no wiser for the experience.
But that high school was still better than the one that followed.
Tim arrived at his new program on Thursday, November 30, at eleven in the morning. The insurer had approved the first seven days of his stay. On Friday, the program enrolled Tim as a freshman in its on-campus school—I’ll call it High School 3. It assigned him to a youth treatment center and provided him with a semiprivate dorm room.
On Saturday, the program reported Tim missing after he walked away from his unsupervised living arrangement. On Sunday, it discharged the still-missing Tim from its program. I actually received an official transcript for Tim from High School 3 a month later. Needless to say, he hadn’t earned any credits. And the insurer did not even have to pay for all seven days.
Tim was missing for two days. He found shelter from the December cold in an abandoned building. His smoking fire attracted the attention of neighbors, who called the police. They brought Tim to the New Haven Juvenile Detention Center—his first experience in a correctional facility.
When Tim had flown back with me to Connecticut the week before, he was calm, well-fed, clean, and in good spirits, looking forward to seeing his siblings again. But by the time he arrived at the juvenile detention center, he was nervous, dirty, hungry, and upset. He had not slept well for several nights, and during his intake evaluation he reported that he was hearing voices again. He was transferred to a local hospital for a psychiatric evaluation. The hospital admitted him on December 5, just five days after his discharge from the hospital in the northwest. It felt like a month to me.
My insurer approved the stay and paid over $6,300 for the ten days he was hospitalized. Tim’s case coordinator admitted to me that she may have been premature in pushing so aggressively for Tim’s discharge from the hospital in the northwest and admission to the drug treatment/behavioral health program in western Connecticut. I had a queasy feeling that it would not be the last time a premature discharge or inappropriate placement would lead to another hospitalization for Tim.
During his ten-day hospitalization, Tim’s doctors concluded that he needed a long-term mental health treatment program. The hospital offered such a program, but it did not have a bed available. These shortages are nothing new. A March 2008 Treatment Advocacy Center report (Torrey et al. 2008) characterized forty-eight of the fifty states, including Connecticut, as having a bed shortage in the range of serious to critical—shortages that have only been growing over the years. And this report was published just before states embarked on four years of deep cuts—totaling well over $4 billion—in state mental health services. So after ten days, Tim was sent back to juvenile detention to await a court hearing. Two days later, he again reported that he was hearing voices. Detention center officials sent him back to the hospital’s emergency department. This time he was deemed stable and sent right back to detention.
To end this bouncing back and forth, we needed to find a bed for Tim as soon as possible. I learned that there might be one at the Riverview Hospital for Children and Youth, a state facility located behind the Connecticut Valley Hospital campus in Middletown. Riverview had a small, specialized program for young people referred from the juvenile justice system. An intake worker confirmed in late December that a bed would open by the end of January and that it could be Tim’s if he would agree “voluntarily” to a three-month stay.
Tim did not want to make this commitment, but he weighed it against the alternative. If he said no, the court would probably still send him to Riverview for a thirty-day evaluation. Then he would be back at the detention center awaiting a court hearing. That could take days or even weeks, and from there he would probably still be required to go to a partial hospitalization program.
This cooperation between treatment and correctional programs to bring pressure to bear on people with mental illness to accept treatment “voluntarily” in lieu of incarceration is a strategy of today’s growing number of behavioral health courts. For many, it is controversial because it can be considered forced treatment. Several studies (for example, Ridgely et al. 2007; Steadman et al. 2010) have found behavioral health court programs to be effective at lowering recidivism rates and improving treatment compliance. The challenge, of course, is having a treatment program available so the person doesn’t just sit in jail waiting for a bed.
Tim waited about a month for the bed at Riverview to open. During this time, he received no educational or clinical treatment services. However, his stay at the juvenile detention center helped stabilize him—and even helped to reintegrate him into our home life again. He had a regular schedule and routine and ate and slept well. He was allowed frequent visitors and was also given day passes to spend time at home during the holidays.
Tim went to juvenile court in mid-January and was ordered into his “voluntary” Riverview program on January 17. He remained on “intensive probation” until mid-May, meaning that if he left Riverview during that time he would be taken back into custody. At the time of his Riverview admission, he was physically healthy, well-groomed, clean, and sober. He conversed easily with adults. He was interested in current events, cooking, rock music, comedy movies, and complex video games. He enjoyed conversations about religion and philosophy and often found humor in the ironies of life. He seemed, in many ways, like a typical teenager.
But Tim was far from a typical teenager. He brought with him to Riverview a kitchen sink’s worth of labels. His preliminary or admission diagnoses at the time were listed as psychotic disorder, conduct disorder, cannabis abuse, ADHD, learning disabilities, and dyssomnia. He was also suspected of having bipolar disorder, schizoaffective disorder, PTSD, and possible cannabis dependence. Trying to treat all of these at once presented a buffet of possible drugs and therapies. Clinicians had continued to add diagnoses over the years, but I wasn’t certain that we had found the correct one yet. And neither was Riverview. Its plan was to clarify Tim’s diagnoses, determine the appropriate medications, and use individual and group counseling to help him manage his symptoms of mood instability, anger, low frustration tolerance, suicidal ideation, aggression, and auditory hallucinations.
Tim’s hospital-based social worker reported that he adjusted well to the hospital routines. He was enrolled in a campus school for his first meaningful educational instruction in almost a year. I’ll call it High School 4. He did well there at first as the school reviewed material he had previously learned and relied heavily on classroom participation, receiving A’s in English, math, and health and B’s in social studies, earth science, art, and computer technology. And as he still aimed to please adults whenever given the chance, his teachers reported that he displayed appropriate classroom behavior, interacted appropriately with teachers, and displayed good effort in class.
To determine where Tim was academically, the school also administered some standardized tests. When he took them, the school noticed the significant discrepancy in his oral and written abilities. Tim was reported to be “very lethargic” during the testing. The results included that “he was unable to tell time, had no knowledge of decimals or fractions, and appeared to be unable to compute math problems with the use of a paper and pencil.”
Tim tested at nearly the same levels he had achieved three years earlier, and a lifetime ago, at his sixth-grade school in Middlefield. He had made no academic progress since then. We attended a PPT meeting during the second week of February. While his IEP acknowledged that his expected placement was tenth grade, in light of his test results he remained in ninth.
Tim’s overall academic goal at Riverview was to earn credits toward a high school diploma. He ultimately earned three. His overall behavioral goal was to improve his interpersonal and social skills. He had less success with this. Tim’s IEP called for him to receive instruction in a “regular” classroom with no more than seven students and to participate in a behavior-management program, which included positive reinforcement, cueing, a point system for tracking appropriate behavior, time-outs if needed, and removal from the classroom for unsafe behavior. Suspension wasn’t used at this school because there was no place to send a suspended student.
Tim was not an entirely willing participant in his clinical program. He was always polite and never refused to attend his family counseling session. He and I usually had these sessions alone, without any of the other children present, and he had separate family counseling sessions with Linda because the issues he needed to work out with her were different from the ones he needed to work out with me. But he usually had little to say when I was there other than to complain about minor issues he had at the hospital with patients or staff or at home with his mother when he had a day pass, and to ask when his next day pass might be. To me, it seemed that he was just tired of talking about himself and his issues after years of counseling. Tim’s social worker reported that he was also very cautious in his group counseling sessions but that he was a little more open in his individual counseling.
My insurer approved Tim’s stay at Riverview, but we were still fighting about past bills. One day, I was summoned to a meeting to appeal a denial of payment. There were so many appeals pending at the time that when I arrived at the office, I had to admit that I had no idea which denial we were there to discuss. Neither did the people conducting the appeal. So we picked one—the denial of care for Tim’s last week at the hospital in the northwest—because it was for the biggest amount. The hearing board members listened to me with a sympathetic ear, especially when I explained how his early release had led to his jailing and rehospitalization the following week. The administrative aide who accompanied me from the hearing said that mine was one of the most compelling stories she had heard. Yet the appeal was still denied.
Denials of care were our norm. Before the Mental Health Parity Act was enacted in 2008, 90 percent of health insurers imposed restrictions on mental health treatment. Now, with even stronger mental health benefits under the Affordable Care Act (ACA), things are supposed to be different. Under ACA, insurers are supposed to make mental health benefits part of the “essential health benefits” offered in all insurance packages. And under the Mental Health Parity Act, these benefits are supposed to be equivalent to the benefits offered for the treatment of physical illnesses. But neither law is perfect. The “essential health benefits” in the ACA are in part determined by the historical record in each state (which means that they can still differ from state to state), and “parity” does not in and of itself prevent limitations on services—or guarantee that mental health providers will be reimbursed for services at the same level as other providers.
One day, Tim’s Riverview social worker pulled me aside to talk about Tim’s clinical profile. Tim was refusing to bathe. He was being aggressive toward other teenagers. There had been a couple of times when he needed to be restrained, and he seemed unable to manage either his thoughts or his emotions.
She said that Tim’s clinical team had met, but they were not sure what his primary diagnosis might be because he was exhibiting so many symptoms, some of which might be side effects from medications. They proposed a “med wash,” which involved stopping all of the medications Tim was taking. It would take several weeks for the effects of all the medications to clear his system, but the symptoms that were left would give a much clearer picture of his illness. And he would be safe in the hospital for the whole time. At this point, I thought that the most important thing after so many years of uncertainty was finally getting a clear diagnosis so we could get the correct plan of treatment with the most appropriate meds for Tim. I agreed to the med wash, as did Linda.
I was commuting between Austin and Middletown at the time. I had a new job in Austin running a community health and mental health collaborative called the Indigent Care Collaboration and was finishing up my old job in Hartford. I was also getting my Middletown house ready for sale while helping Pam settle into our new house in Austin. When I was in Connecticut, I visited with Tim at Riverview as often as I could, and we enjoyed talking, eating together, and playing Ping-Pong in the recreation area. Tim was also allowed to spend some days and nights at home. He was generally well behaved with me at home. He typically watched television, played video games, or spent time visiting with his siblings. I was running a Catholic Youth Organization basketball league at the time, and Tim also came happily with me to see his siblings play in their games. But I did not ever leave him alone or even let him far from my sight.
Over time, as he went off his medications, Tim’s agitation increased. He became more hyperactive, short-tempered, and anxious. I didn’t have too much trouble with him, but his social worker at Riverview reported that he occasionally had to be put in a time-out room. Linda also suffered through a challenge or two. One time, after Tim went to a friend’s house and drank alcohol, she told him that this was unacceptable and ended the visit. But as she was bringing him back to Riverview, he jumped out of the car along busy Route 66 in Middletown. She called 911 and me for help. The police found Tim and took him back to Riverview, while I followed behind to check him back in.
After a month, the report from Riverview was a little frightening: “While off medication, Tim became grossly psychotic as evidenced by no longer showering or attending to his grooming, talking to himself, responding to auditory command hallucinations to hurt himself and others, marked thought disorganization, inappropriate affect, frank paranoia and delusions about people plotting to hurt him.”
Later, the hospital reported that “at one point he tried to hang his clothing from the sprinkler in the time out room so that he could hang himself.” I was astonished at how severe his symptoms were without medication, especially because I had never witnessed some of the worst of these symptoms myself.
His social worker scheduled a meeting with Linda and me in April and told us that the clinical team had come to a consensus. They believed that Tim had schizoaffective disorder. Diagnoses of schizoaffective disorder are rare, and there is some debate about whether it is simply the co-occurrence of schizophrenia and a mood disorder or a separate clinical condition with aspects of both schizophrenia and bipolar disorder (Abrams, Rojas, and Arciniegas 2008). I didn’t care about this debate. From my perspective, there were only two things that were relevant about the diagnosis. The first was that for the first time we had a clear clinical consensus that Tim might have schizophrenia. The second was that this afforded us an opportunity to try some drugs that had not been available to him before. The team at Riverview was recommending that we try the atypical antipsychotic Geodon, a brand of ziprasidone.
Tim’s condition improved after he began taking Geodon. Over the next several weeks, his fear, agitation, and anxiety levels decreased; his auditory hallucinations quieted down; his hygiene improved; and he was clearer and more rational in his thinking. I was thrilled to have the Tim I knew best back. He also seemed to be tolerating the drug well, without any side effects. By the beginning of May, we were making plans for Tim’s discharge from Riverview. After some discussion, we decided that Tim would come to live with me when I moved to Texas in the summer. I began to look into services and schools for Tim and arranged for a weekend pass from Riverview so that he could accompany me and the other children to Austin to attend Verena’s high school graduation over Memorial Day weekend.
Tim had originally been scheduled to be discharged by then. But Riverview did not think he was ready, and I agreed. Unfortunately, Riverview made a critical mistake in how it went about accomplishing this. Without telling me or Linda in advance, it contacted Tim’s probation officer a week before his scheduled discharge and arranged for a finding that Tim had violated his probation on the day of the alcohol incident with Linda. Tim was locked in place until he could go back to court in June.
When the social worker told me this, I was not pleased. The alcohol incident was more than a month old, and Tim had stabilized considerably since then. She told me that Tim had remained calm and under control when they told him what they were doing. But they missed the point. They lost his trust, and he never really developed a close working relationship with a therapist again.
Tim remained at Riverview until July 17. He eased back into home life and played an important role in Pam’s and my wedding in Middle-town on July 5 as one of my two “best men” with Ben. It was Tim’s first major family event in a year and a half. We had a big picnic on an estate owned by the city. He had a great time eating lobster and veggie burgers, playing volleyball and bocce, and listening to music.
Tim’s discharge summary from Riverview noted that he needed “medication management of psychiatric symptoms of depression, anxiety, paranoia, auditory hallucinations, inattention, and disruptive behavior.” He also required “constant prompting with his limited motivation for self-care, hygiene, and positive social skills.”
Finally, with respect to illegal drugs, “Tim has a history of self-medicating with marijuana; he intends to quit for one year, but continues to glorify uses and ‘business.’” Presumably, that meant that he thought drug dealing might be a lucrative career someday.
In summary, Riverview considered him to be “at high risk for reemergence of psychiatric symptoms.” He was discharged on ziprasidone and trazodone, the antidepressant he had been taking for some time to help him sleep.
His discharge diagnoses included schizoaffective disorder, PTSD, ADHD, learning disorder, and cannabis abuse. His mental illness was described as serious; his prognosis was guarded.
And Pam and I faced two more challenges as Tim came to live with us. “I’m institutionalized now,” Tim joked, paraphrasing a line from The Shawshank Redemption. Tim would have a difficult adjustment to the freedom of living at home again and to the demands of attending a regular school.
The second was that Tim’s biological and legal clocks were ticking relentlessly toward adulthood. If we did not do something in the next eighteen months to teach him some survival and living skills, he would turn eighteen with little or no prospect for a manageable life.
Tim left Riverview Hospital after six months of inpatient treatment. My insurer paid at least $141,000 for his stay—all of it just after its penny-wise, pound-foolish decision that Tim would no longer need hospitalization but only services in a drug treatment program when he came home to Connecticut. The State of Connecticut picked up most of the rest.
And just as everything else is bigger in Texas, soon these numbers would grow bigger there, too.
