Amber's Case: The Warehousing of California's Mentally Ill Children

Rachel Jacobs

Writer’s comment: Throughout the long ordeal of seeking treatment for my mentally ill daughter, I have actively pursued every possible way to advocate for Amber in her struggle to recover her mental health. Amber is one of the faceless, voiceless children that are shuffled through the Juvenile Court System in search of appropriate treatment. Amber’s story is typical of what happens to mentally ill children, who, because of their resistance to treatment and a tendency to run away, require locked mental health facilities. Although the voice in this article is mine, Amber gave me permission to tell her story, in the hope that her experience will show how urgently we need to provide appropriate care for our mentally ill children.
        I wish to thank Jayne Walker for her encouragement and her belief that this article deserves an audience, and for her tireless editorial efforts in my behalf.
—Rachel Jacobs

Instructor’s comment: In “Amber’s Case,” Rachel Jacobs’ first-person reporting transforms painful experience into powerful advocacy. She tells the story of her daughter’s mental illness lucidly and unsentimentally, weaving in contextual details that make the reader see both how and why Amber has been so poorly served by a “system designed to fail her.”
        Another of Rachel’s pieces, “The Invisible Parent,” scored equally high in the Prized Writing competition. She decided, and I agreed, that this is the one that should be published. The issues that “Amber’s Case” illuminates have gone virtually unreported in the press. Because she is committed to publicizing the plight of children like Amber, Rachel enrolled in my feature article writing class and learned how to apply her talent and training in writing fiction to reporting. I’m delighted to think that this Prized Writing clip will help open doors for her as a free-lance writer.
—Jayne L. Walker, English Department

I have few photographs of Amber from the last four years. Those I do have are marred by shadows of twisted barbed wire and a “Take Pictures Here” sign that looms over her head. In all of them, she is backed up against a red brick wall clad in a prison uniform of royal blue T-shirt or sweatshirt, jeans, and white athletic shoes. Amber is an inmate in the California Youth Authority in Ventura. Her crime is being mentally ill, and she is there because, in the final analysis, there was nowhere else for her to go.
         Four years ago, on a sweltering August afternoon, I committed my thirteen-year-old daughter Amber to Sunridge, an acute care mental health facility in Marysville, California. That day was the beginning of a long, heartbreaking journey to obtain long-term care for my seriously ill child.
         At the time of her initial hospitalization, we were living in a homeless shelter, the consequence of my ex-husband’s refusal to pay child support, and my inability, despite my position as head cook at a local senior care facility, to pay our $650 a month rent in Grass Valley. It was at the shelter that Amber’s long-standing but untreated mental illness began to play havoc with her already tightly circumscribed life. Despite the many horrendous experiences I had endured, including rape, Amber’s hospitalization and subsequent diagnosis were the most difficult challenges I had ever encountered. And they were only the beginning of my ongoing struggle to obtain proper treatment for her in a system that is designed to fail her.
         That summer Amber’s behavior was wildly out of control, swinging from extreme agitation and hyperactivity to lethargy and suicidal depression. She was diagnosed as suffering from bipolar disorder, better known as manic-depressive illness, and borderline personality disorder. While some of her symptoms were caused by the street drugs she sought in an effort to self-medicate, some of them typified my daughter’s temperament from birth.
         For years I had told friends that something was wrong with Amber. Amber was a difficult baby and an impossible toddler. She was different from other children and seemed always to be struggling to keep herself under rigid control. When she lost control, she raged for hours on end. One afternoon, when she was four, she ran around her bedroom in circles screaming at the top of her lungs for nearly two hours. I never knew what to do when these tantrums occurred. She was beyond soothing, or punishment, or threats, locked into some outrageous cycle of activity promoted by an unseen attacker. But when she was in control, she could be golden—polite, sweet, obliging, and always brilliant.
         As a child growing up during the fifties, I was fascinated and horrified by The Bad Seed, the story of a beautiful girl child who charmed everyone but her mother. While Amber was far from the psychotic child murderer of the film, she exhibited what psychiatrists term “inappropriate emotional response.” Her smiles looked strained and awkward, as if someone had painted them on. She laughed when other children showed fear or alarm. But for the most part, her emotional response was flat.
         Amber rarely slept for more than six or seven hours at a time. By the age of eight, she was staying up half the night reading or cleaning her room. She refused to wear any but the softest clothing, and busied herself with mindless activities like re-arranging her toys over and over. Amber never felt the carefreeness we associate with childhood. She was always burdened with cares.
         I rationalized that her “bad” behavior was caused by colic, or the terrible two’s, or hypersensitivity. The truth was, I was afraid. And when she was golden, I could dismiss my intuition that something was very wrong with her. Until the second semester of the fifth grade, when her world shattered because of her parents’ divorce, Amber was every teacher’s ideal student. Her first grade teacher wrote, “Amber does most things well. Her mature attitude and good study habits result in excellent achievement. She learns quickly, and academically she excels. She is a leader, a help to others, and mostly a positive influence in the classroom.” Amber is also a beautiful child. One psychiatrist described her as “tall, slim, and extremely attractive, with long, lustrous, auburn hair.”
         The social worker and child psychiatrist at Sunridge recommended long-term residential care for Amber. They said that although lithium had brought her bipolar disorder under control by the end of her thirty-day maximum stay, her borderline personality disorder required the discipline of a rigidly structured environment. If she did not receive this kind of treatment, her long-term prognosis was extremely poor. She might easily die of a drug overdose or suicide within a year. Or she could commit a violent act that would result in her incarceration. But when personality disorders presented themselves as early as Amber’s had, her psychiatrist reassured me, there was a good chance that behavior modification therapy could enable her to lead a productive life. Then the psychiatrist threw the final punch. He said that Amber might suffer from “the bad seed syndrome” caused by a genetic brain malformation.
         When I left his office, I almost collapsed in the parking lot. I felt then, and I still feel at times, that my daughter had been given a death sentence. At least, my hopes and dreams for her had died. I’ve learned since that the grieving process is much the same as when a parent loses a child in death. For almost six months, I cried every day. And I blamed myself for her illness.
         Why hadn’t I had her treated before? Why hadn’t I taken her to a psychiatrist when I first suspected she was ill? The reason is that mental illness, and the denial that sometimes accompanies it, runs rampant in my family. Or as Cary Grant quipped in Arsenic and Old Lace, “It doesn’t run, it gallops.” On my father’s side, one child in every generation suffers from it. His grandmother was mentally ill, and his sister was institutionalized repeatedly until she died of alcoholism at the age of forty-seven. Yet when I asked my father her diagnosis, he said he wasn’t sure what it was. My brother made national headlines when he killed his ex-wife’s lover in a manic rage a few years ago. But it was my mother's severe mental illness that colored my assessment of my daughter’s behavior more than any other factor.
         My mother suffers from bipolar disorder and several personality disorders, including histrionic, narcissistic, and borderline. She refuses to admit her illness, despite one hospitalization, and therefore remains untreated. There is an unwritten law in my family that we do not speak of my mother’s mental illness. We were taught to accept her abhorrent and irrational behavior as normal when we were growing up. This learned acceptance of wildly abnormal behavior caused me to distrust my feelings and to blame myself for the irrational actions of others. It is also the reason I married a man who mirrored my mother’s behavior. Amber’s dad was diagnosed with bipolar disorder and borderline disorder after our divorce.
         Because of this history, my daughter’s diagnosis hit me particularly hard. I had seen too many lives, including my own, ravaged by mental illness. Now, I thought, she at least has a chance. I can find her the help that my mother, brother, and ex-husband didn’t receive until much too late. I asked the social worker how I might obtain proper care for Amber. I was informed that MediCal, our only insurance at that time, refused to pay for long-term juvenile residential treatment. Our best hope, she advised, was to involve the juvenile probation department, in the hope that the court would place her in an appropriate facility.
         Amber was already on informal probation for pushing down an ex-boyfriend at school. She had thrown rocks at his house and made harassing phone calls to his home. I was advised to call the probation department whenever she disobeyed one of the many stipulations of her probation. For instance, when she refused to attend school, or left the house without permission, or broke curfew, or associated with undesirable peers, I reported these infractions to her probation officer. Poor behavior that other parents might have handled at home, or possibly dismissed, was handled by the probation department, because I was led to believe that sooner or later the court would place her in an appropriate treatment facility.
         One evening, approximately three weeks after her release from the hospital, Amber informed me that she was going out to meet her friends, all of whom were addicted to crank, and that there was nothing I could do to stop her. She screamed at me relentlessly for almost an hour as I tried to reason with her. Finally, she headed for the door. I moved to block her escape, and she pushed me aside and bolted. Amber had a history of running away. Once, she was gone for two weeks. I phoned the police and asked them to pick her up. Within ten minutes she was back home in the company of two officers. I explained the situation to them and asked them to take her into custody. They said their hands were tied unless I filed an assault charge against her for shoving me. I reluctantly filed the charge and they handcuffed her and took her to Juvenile Hall. This was the beginning of our long, tedious, disappointing journey through the Juvenile Court System.
         Amber spent a month in the Hall, then she was placed on formal probation and rendered a ward of the court. Soon after her release, she was picked up again as a runaway and taken back to the Hall. This time she spent two weeks there before she was released, and the pattern repeated itself. In December of 1993, four months after her diagnosis, she was placed in Our Family, a group home on the grounds of Napa State Hospital.
         According to Ron Sater, a mental health worker in Yolo County, approximately 125,000 emotionally disturbed children in California eventually make their way into the system seeking treatment. Group homes, the most common solution, are numbered according to the restrictiveness of their environment. Children as ill as Amber, who resist treatment and have a history of running away, require locked level-fourteen group homes. What I wasn’t told when I began pursuing treatment for her was that California does not currently have licensed, locked level-fourteens. As a result, four hundred California children are shipped to Utah, Nevada, Arizona, and other states that offer these facilities.
         Our Family was entirely inappropriate for Amber. A popular program for drug-addicted teens, it is staffed by recovering addicts who are not trained to care for the mentally ill. Their policy is that the children are not allowed to leave the grounds, but if they do, they are no longer the legal responsibility of Our Family. Twice they called to inform me that Amber had walked into Napa and that they were looking for her. The second time she walked, Amber spent the night with a family who found her sitting in front of a 7-11 at midnight, being harassed by a group of boys. The next day she was discharged from Our Family and ridiculed by the staff for failing their program.
         Within a month, she stole my checkbook. Her boyfriend forged and cashed $600 worth of bad checks for her and gave her a ride to Reno, where she spent two weeks living with a prostitute. She was found sleeping in a car after trying to drown herself in the Truckee River. The child who only two years before had been selected as student of the year was hauled into the courtroom shackled and handcuffed. She had not taken her medication in over two months and was again completely out of control. Aware of the seriousness of her illness, the judge placed Amber at Kingsview Mental Health Center in Reedly, California. It was now eight months after her diagnosis.

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         After her placement at Kingsview, I began attending family support groups sponsored by the California Alliance for the Mentally Ill, or CAMI. At forty, I was the youngest parent in the group and the only one with a child who was not schizophrenic. All of us related experiences of children who spent time in jail or prison. Most of our children had lived on the streets at one time or another. Too many tears were shed at those meetings by parents who had watched their children fail one inadequate placement after another.
         It is safe to say that a large percentage of the 125,000 children in need of mental health care live on the streets. Why? Like my daughter, they resist treatment, develop the dual diagnosis of addiction and mental illness, and slip out of the system as runaways. When Reagan emptied out the mental hospitals with the sanction of the ACLU to give the mentally ill their “liberty,” sentimentality as opposed to good sense was the order of the day. As much as some may rail against the idea of locked wards, there will always be those who desperately need the opportunity to be treated within the safety and security they afford.
         Of course, the real reason behind deinstitutionalization is economic. State hospitals are expensive. Today, out of the original five, only one is left, Metro in Orange County. Camarillo was recently closed to make room for a junior college, and the children’s ward at Napa is being closed while the rest of the hospital is converted to a forensic facility. The new method of standard treatment is not costly institutionalization but “diagnosticate, medicate, and vacate.” Those children who are too ill to care for themselves, or to be cared for by family members, fail at one group home after another until finally only out-of-state placement or the California Youth Authority awaits them. Support services, like respite care, are offered to the families of mentally ill children in only 12 out of 58 counties, and these were developed through the relentless efforts of CAMI. If these children were cancer victims, the public would demand that the appropriate care facilities be made available. Because they are mentally ill, and because many of them have been branded “bad” or juvenile delinquent, they are written off.

* * * * *
         At Kingsview Amber repeated her pattern of running away. She fled with a male resident, and when she was returned she was arrested for attacking a staff member. By this time, she was institution savvy. She could get herself discharged for two violations: running away or attacking a staff member. Her attacks generally consisted of spitting or tossing glasses of water. She had also started self-mutilating, cutting her arms with whatever was handy, a nail, a razor, a paper clip. After she severed the major artery in her arm, she was confined to the locked psychiatric ward of a local hospital. Upon her release, Kingsview discharged her as “unsuitable for their program” and recommended a locked level-fourteen home. When I called to find out where to find this kind of facility for Amber, her psychiatrist told me that there weren’t any such facilities in California, and that my best hope was to get her into Napa State Hospital. Once again, I brought her home, and soon after she was taken back to Juvenile Hall for again violating her probation. She had run away and, on a rainy night, had broken into a public school in search of shelter.
         It was now December of 1994, sixteen months after her diagnosis. In order to improve my family’s financial situation, I had returned to college. I was accepted at the University of California, Davis, and my son and I moved to Yolo County. Amber’s probation officer in Nevada County, who had known her since she was in second grade and always liked her, consistently acted in Amber’s best interests. We were in for a rude awakening in Yolo County. Although the probation department acknowledged that Amber did not have the criminal record that would ordinarily warrant such a placement, they recommended that she be incarcerated in the California Youth Authority in Ventura, the only girl’s CYA facility, for four years or until she turned eighteen.
         The California Youth Authority is a child’s prison. Most of the teens there are violent gang members, murderers, rapists, armed robbers. Or they are seriously mentally ill, and CYA is an inexpensive place for the counties to dump them. Amber’s public defender pleaded that she be sent to the Juvenile Ward of Napa State Hospital, which had not yet been closed. Napa is close enough to Davis that we could have visited her regularly and participated in family therapy. This therapy would have facilitated a smoother transition home when her treatment ended. Instead, a month before her fifteenth birthday, Amber was sentenced to four years in CYA by Judge Arvid Johnson. Judge Johnson refused to address the issue of Amber’s mental health. He is on record as saying that “the state of California is not a bottomless money pit” and that Yolo County could not afford to pay for her hospitalization. He said he had heard, although he had no firsthand knowledge, that CYA had many good programs for children with “problems.” The public defender contended that CYA is a warehouse for mentally ill children the state does not want to treat.
         Amber was in the general population without psychiatric treatment or medication for eight months. The psychiatrist who did her incoming evaluation diagnosed her as suffering from acute amphetamine withdrawal and not manic-depressive illness. A serious manic episode and my intervention transferred her to the psychiatric ward, where she was re-evaluated, diagnosed as manic-depressive, and treated with lithium. Months later, she was re-diagnosed by their psychiatrists as also suffering from borderline personality disorder and obsessive-compulsive disorder.
         In the last two years, CYA has provided Amber with enough care to obtain her high school equivalency degree and complete one semester of junior college. She has been up for parole several times, but she consistently sabotages her release. Amber is now thoroughly institutionalized, afraid of being on the outside. Her most recent parole date of June l997 was denied for a “sexually acting out episode” (making out with her boyfriend). For this infraction, she was also sentenced to a time-add of nine months and dropped from the work program and from college. As one of her doctors wrote, “Often her acting out in the Ventura School environment does lead to punitive measures which simply drive her defiance in a vicious cycle.”
         It is now highly unlikely that she will be released before June of 1998, when her maximum sentence is served. Because of the distance and my financial situation, I have visited her only three times in two years. I worry about what will happen when she is finally dumped back on the streets without a community transition program, something the state offers its hardened criminals but denies its minors. During her internment she has developed a gang mentality and is now at higher risk for later being confined to prison as an adult.
         If the residential program that Amber required had been available immediately upon her release from Sunridge, I am convinced that she would not have a criminal record and would now be well enough to live at home. Within two years after Amber first entered the “mental health” system, I learned that MediCal had begun paying for long-term residential care. Ironically, this was too late for Amber, because by then she was a ward of the court and ineligible for MediCal. But I now know that even if money had not been an issue, there still would have been no place in California where she could have received the level of care she needed.
         Twelve years after California passed the Community Treatment Facility Bill, the locked level-fourteen group homes that it authorized have yet to open. Since l985, social workers, mental health workers and children’s advocates have debated the rules and regulations under which the facilities should operate. While they argue the humanity of using five-point leather restraints on disturbed children, those the facilities were designed to treat are placed out of state and hundreds of miles from home by compassionate judges or incarcerated in CYA by the less than compassionate, or they end up living in the streets. And thousands of parents mourn the loss, and the losses, of their mentally ill children.