When a Mentally Ill Child Becomes a Mentally Ill Adult
Jennifer Hoff looks up in sudden panic, tilts her cell phone toward her chin and says, "I wanna know if he has any shoes on." She returns to the sergeant on the other end of the line. "Can I ask you to just radio the officer in the street?" she pleads, her voice desperate. "Can I just ask him if Matthew is wearing any shoes?"
At 8:25 p.m. on Tuesday, Feb. 21, the Santa Ana Police Department called Jennifer to inform her officers had located her son, Matthew, after he went missing for 15 days. They found him wandering the street with methamphetamine and took the 18-year-old to the county jail. According to police reports, officers would discover that earlier that night, he had stolen $130 from a Subway sandwich shop after picking up a rock, wrapping a sweat shirt over it so that it looked like a weapon, and threatening an employee.
Sitting at a long, wooden dining table in her sprawling Ladera Ranch home, Jennifer nervously doodles on a piece of paper scribbled with the names of people with whom she's supposed to speak. The 38-year-old mother of three has pixie-brown hair and sunken doe eyes that squint as she speaks. As the sergeant updates her on the situation, she tries to insist the county's Centralized Assessment Team (CAT) evaluate her son for a 5150, California's code for an involuntary, 72-hour, psychiatric hold, granted to those who are a danger to themselves or to others or are "gravely disabled." Her husband, Gary, wearing shorts and an untucked white undershirt, shuffles around the room in silence.
"What exactly are you trying to explain to me?" she asks the sergeant on the phone, shaking her head. "You're going to explain to me the circumstances of why the CAT team is not going to be called out tonight?"
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She listens, then interrupts: "He's a chronic, mentally ill young man who has been missing for two weeks. He has no residence. He has no identification on him. He has no income. He has no way to provide for his own medical care. He's living on the streets."
There's a pause, and then a pound on the table. "Quit yelling at me!" she screams. A dog barks.
"I want you to answer one question," she says. "If he is homeless and without the ability to provide food, clothing or shelter, is that not being gravely disabled?"
When he tells her it is not, she slumps back, defeated. "Okay, that's all I need," she answers.
Jennifer hangs up the phone and blinks her eyes in disbelief. "Too bad it's meth and not something that can get us more time," she says. "We always try to get more time."
Matthew, who has a lean physique and a sneaky, boyish grin, is diagnosed with bipolar disorder, PTSD and other psychiatric illnesses. On this night, it's two weeks before his 19th birthday. For the past 11 months, since turning 18, he has drifted through a circuit of hospitals, homeless shelters and jails. Just before he went missing, police arrested the teenager for check fraud, then released him from jail in the middle of the night without notifying his parents. When Matthew hadn't called home in a few days, the Hoffs plastered his photo on Facebook and shelter walls.
"Where are we at?" Gary asks with a look of exhaustion and numbness. "It's just gonna be the same exact thing once again."
The Hoffs find themselves in a dark chase with no end in sight. They believe that Matthew, who is off his medication, belongs in intensive treatment for his own safety and that of the community. But Matthew doesn't want treatment. And because he is 18, he cannot be forced into it by the county until he is considered an imminent threat or his condition gets worse—by which point it might be too late.
It's a Catch-22 that strikes many family members of patients—mostly young males—who are severely mentally ill and refuse to seek care. They've learned that as difficult it is to provide safety for a mentally ill child, it is exceedingly more difficult when that child becomes a mentally ill adult. Laws that previously gave parents control over their child's treatment disappear and are replaced by new laws that protect the individual's freedom and privacy. Barred from their child's medical decisions, parents find themselves in an abyss of helplessness and guilt.
"We can't just scoop him up—that would be kidnapping," Jennifer explains.
The Hoffs, along with a group of other parents, community advocates and psychiatrists, believe that in the name of individual rights, the pendulum has swung too far against individual needs. In an effort to help bridge the divide, many are urging Orange County officials to adopt Laura's Law, which authorizes a court—with recommendations from doctors and family members—to order outpatient treatment for those with severe mental illnesses such as schizophrenia, bipolar disorder and major depression. Individual counties must decide whether to implement the state law, and so far, only Nevada County has it fully in place. The law will expire at the end of the year unless state legislators choose to extend it.
Until there is change in the system, Jennifer believes time is simply ticking—to what end, she doesn't know. "We're the ones screaming danger, danger, danger," she says. "My responsibility to keep him safe hasn't changed—I'm his mother, and he's disabled. But the controls I have to ensure his safety have ended. So I'm doing everything I possibly can to knock on every single door and ask the same questions: 'Why can't I keep my son safe? Why can't I keep the community safe from my son?'"
* * *
In the 1950s and '60s, mental asylums were ready to crack. Plagued by overcrowding, filthy conditions and abuses within the system (as memorably depicted in the Oscar-winning One Flew Over the Cuckoo's Nest), activists condemned institutions and argued patients should be integrated into society rather than isolated. One California organization, the Keep America Committee, put out a pamphlet that described mental-health treatment as a Communist plan "to transform a free and intelligent people into a cringing horde of zombies."
The Lanterman-Petris-Short (LPS) Act, therefore, was considered a victory for human rights. Signed by then-Governor Ronald Reagan in 1967, the California law put massive barriers on those who wanted to treat people without their consent. New medications restored reality in mentally ill patients without throwing them into a stupor, and the law gave them the right to take or refuse them as they desired.
But for the most severe patients, freedom ended up looking like abandonment. Today, three times as many mentally ill people stay in jails as in hospitals. According to the National Treatment Advocacy Center, people with untreated psychiatric illnesses make up one-third of the homeless population. Carla Jacobs, coordinator of the California Treatment Advocacy Coalition, says that while the LPS Act had "excellent intentions," it "became a bastion of neglect for the most severely ill."
"What had been overlooked was the fact that some people with severe mental illness don't have the ability to recognize they're ill," she says.
The medical term for this is anosognosia, also called "lack of insight," a symptom of brain diseases such as schizophrenia or bipolar disorder; stroke patients sometimes experience a similar impairment. "When the brain is sick, you can lose your mind and not know it," explains psychiatrist William Callahan. "We can actually measure a loss of cell volume in the hippocampus, the center for short-term memory. We all learn to trust what the brain tells us. If the brain says you're fine, you won't [seek] treatment."
With bipolar disorder or schizophrenia, most patients first experience clear symptoms in their late teens or early 20s, the Aliso Viejo-based doctor says. As patients near the age of 18, he says, there is a "feeling of urgency" to get them proper treatment to "save their brains." With the right care, people can and do improve, but serious mental illnesses are cyclical in nature, and when a disease calms down, some patients get tired of the side effects and stop taking their medication. That's when outside pressure is needed.
"With Alzheimer's patients, families have to step in and say, 'No, you're not safe' before they leave the stove on and burn down the house," Callahan says. "With children, parents need to drag them to the doctor's office to get their shots. Yes, it's coercive and against their will, but that's what we have to do."
While working as the facility manager at Orange County Children's Foundation, a county-funded home in Placentia for foster and troubled boys ages 10 to 17, Carmen Hugh often dreaded the day when residents would "age out" at 18. The six-bed house was a capsule of security for the young men, many of whom were diagnosed with ADHD, bipolar disorder and schizophrenia. They adjusted to routines of themed dinner nights, chores, supervised outings, mandatory psychiatry sessions and 9:30 p.m. bedtimes, she says. For patients on medication, employees would hand them their pills and a cup of water.
While not being able to offer specifics due to disclosure laws, "I can recall a couple of young men whom we just knew at age 11 or 12 that they needed serious help," Hugh says. "It was like, 'What's gonna happen when they get older?'"
She has followed the lives of residents years after they moved out. Many went on to find jobs or attend college. But others did not. One such patient was killed after becoming involved with gangs, she says, and another is serving a 20-to-life sentence for being connected with a murder.
"As much as you try to prepare them, sometimes they're just not ready [to face the real world]," Hugh says. "They go from 'I can't wait until I'm 18 and can get out of here' to 'Please don't make me leave.' They're overwhelmed, scared, on medication. We've seen it time and time again."
For some family members, after the clock strikes down on a patient's 18th birthday, it becomes a race against time. Philip Camacho, who lives in Santa Ana, says when he heard the story of Kelly Thomas, a homeless man with schizophrenia who died of injuries inflicted by six Fullerton police officers (one of whom was subsequently charged with murder, another with manslaughter), he thought, "That could be my son."
His 30-year-old son, Philip, has spent a decade suffering from schizophrenia and spends most of his days roaming the streets of Anaheim and Garden Grove. Whenever the elder Camacho gets a phone call saying his son has been arrested, he's relieved. "When he's in jail, I feel more comfortable because at least I know where he's at," he says.
Camacho says his son sometimes stays with his mother and stepfather in Anaheim, but as soon as Phillip starts getting paranoid and feeling confined, he'll take off, and no one can stop him. The family tried giving him a cell phone, but as soon as he felt they were trying to control his life, Phillip threw it on the ground and smashed it. Camacho says his ex-wife went so far as to file a restraining order against her son so that he would be taken into custody if he violated it. Kelly Thomas' mother, Cathy, tried the same approach in seeking help.
"What hurts inside is that you know it's not going to end good," Camacho says. "When his final chapter is written, there's going to be a lot of heartache. He's gonna do something to somebody, or someone's gonna do something to him. It's agonizing."
He adds, "I just hope I never get that call—but I know I will. I dread that day. I dread that day."
* * *
Under the LPS Act, any qualified California officer or clinician may issue a 5150 to patients whom they believe are a danger to others or themselves or gravely disabled. There are extensions available—a 5250 can a hold a patient for 14 days, and the 5270 for 30 days—but a court-appointed commissioner must uphold them. At a time when the state has eliminated a large number of hospital beds because of budget cuts, the process is rarely initiated.
What many parents or guardians wish for is the holy grail of control: an LPS conservatorship, which would allow them to legally make medical decisions for their adult child for up to one year.
Nomi Lonky of Yorba Linda was able to get a conservatorship in 2001 for her son, Jeffrey Hoblin, after being trapped in what she and other family members of mentally ill patients refer to as the "revolving door," the common maze of group homes, hospitals, jails and independent living.
While he was in college, Hoblin started hearing "very evil" voices, ones that "told him to kill himself," Lonky recalls. At 20, he was diagnosed with schizoaffective bipolar disorder (a sort of cross between schizophrenia and bipolar disorder), and in the few years that followed, he tried to end his life five times. Usually high on meth, he would lie on the train tracks in Anaheim, where authorities would find him, and then take him to the hospital, where he would stay for 72 hours under a 5150. When his time was up, a doctor would ask him, "Jeffrey, do you plan to hurt yourself?" and he'd say, "No, I'm not going to hurt myself," only to return to the tracks weeks or months later.
Lonky says her son has always been "brilliantly smart"—he maintained good grades and was the lead drummer in a band—which worked against him in getting treatment. Mental illness is not an intellectual disability, and most patients can present themselves in a rational manner. And authorities won't hospitalize people unless they're gravely disabled, which is defined as the present inability to provide for one's basic, personal need for food, clothing or shelter.
"[Authorities] don't treat other illnesses this way," Lonky says. "They don't wait until you're on your deathbed. If you told a woman with Stage 4 breast cancer that she had to get sicker before she could get treatment, people's heads would roll."
While Hoblin was under a 72-hour hold after the fifth time he tried to commit suicide, Lonky and her husband, both health-care professionals, wrote a letter to the doctor. "It has become painfully clear to us that short-term, acute-care intervention is not working!" it read. She added that the mental-health-care system has simply been "placing a Band-Aid on a person who is hemorrhaging" and that without an extended hospitalization, "one of these days, Jeff will be successful in his suicide attempt."
The letter was enough to get Hoblin on a 14-day hold, and from there, Lonky was granted a temporary 30-day conservatorship (or T-con), and then a full-year conservatorship, with Hoblin's consent (which is required if a patient is not deemed gravely disabled). She immediately got him into treatment at Royale Health Care Center, a locked psychiatric facility in Santa Ana, where he stayed for three months. The program kept him away from drugs and got him adjusted to a medication plan. "By the time he came out, he was thinking rationally enough to say, 'I do need to stay in treatment,'" Lonky says. Nine months into his conservatorship, Hoblin got a job at a Wal-Mart.
The now-34-year-old Hoblin lives on his own in Orange. He still hears voices, but he knows they're not real, Lonky says. While her son still struggles, she believes that getting the conservatorship helped to bring him to a point of stability.
Lonky joined the Orange County chapter of National Alliance on Mental Illness (NAMI), which offers support for families. She teaches parents and other caregivers of children and teens with mental illnesses how to navigate the medical, school and legal system. "We warn parents of 16- and 17-year-olds, 'You think it's hard now to get your kid's cooperation? Wait until you don't even have the right to do it. You have to use the little bit of power you have now to gain their trust.'"
* * *
Passed by the California Legislature in 2002, Laura's Law would act as a cushion for those who cannot be helped by traditional county services. Named after Laura Wilcox, a 19-year-old in Nevada County who was shot and killed by a schizophrenic man who had refused treatment, the law provides outpatient treatment—against one's will, if necessary—to those who meet strict legal criteria, such as repeated hospitalizations and arrests. New York has a similar law called Kendra's Law.
The services called for by Laura's Law may be paid with funds from Proposition 63, a.k.a. the Mental Health Services Act. It's up to each county's Board of Supervisors to opt into the law, and so far, only Nevada County has done so. Los Angeles County has a small pilot program. According to Carla Jacobs, who helped draft the legislation, it has been shown to save lives and money. Last year, the Los Angeles County Department of Mental Health filed a progress report that showed a 78 percent reduction in incarceration and a 77 percent reduction in hospitalization among participants.
Right now in Orange County, Jacobs says, the behavioral-health department "acts as the gatekeeper to all aspects of treatment," and Laura's Law would give families more options.
Her husband, Brian Jacobs, chairman of government affairs for NAMI Orange County, describes the current situation as "It's like you're out on the street, and your house is burning down, and there's a fire hydrant and fire hose in front of you that the system is saying you can't use."
But some question whether Laura's Law is the right solution for Orange County residents. The law cannot force a person to take medication, which some officials say is what severely mentally ill patients need most, and a report by the county Health Care Agency estimates that implementation of the law would cost $5.7 million to $6.1 million per year. (Supporters of the law claim those numbers are grossly inflated and don't account for the savings.)
Orange County Supervisor John Moorlach has been studying Laura's Law for months. "It probably is a great concept, but when it comes to implementation, it gets a little dicier with funding and spending," he says, adding he's "very aware and intimate with the program in Nevada County," but "their population is 99,000, and ours is 3.1 million."
He continues, "We're trying to get some resolution based on all the constraints."
If Laura's Law were in place today, Matthew Hoff would qualify. Jennifer knew very early on that her son would need treatment throughout his life, and by age 8, she saw a glimpse of "how bad things could get."
She had to take him out of two preschools for being disruptive. He could make friends easily, she says, but he could never keep them.
In elementary school, Matthew started having hallucinations and refused to sleep; he would eventually pass out on the floor. Sometimes, he would sit there and pick at his arms until they bled. "He had a brain that was frightening to him," Jennifer says. "He was so scared to be alone."
As he grew older, her son's behavior became "reckless," Jennifer says. He'd get into verbal fights and hitch rides with strangers. At 12, Matthew was enrolled in Orange County Mental Health services and "exhausted every educational environment California had to offer," Jennifer says. When he reached junior high and high school, Jennifer and Gary decided to send him to locked psychiatric facilities in Texas and Montana for his protection.
In the months before he turned 18, Matthew was excited. "He wanted to go to community college, wanted a girlfriend, wanted a driver's license," Jennifer says. "He was as ready as he was ever going to be to face the world."
But, Gary adds, he was also overcome by "enormous anxiety."
"He was counting down the minutes until he turned 18, but he was scared to death of what would happen when he got there," he says. "Because what was there for him?"
When he finally became an adult, Matthew spent two months in a county-funded home in Anaheim for "transitional-aged youth"—or what Jennifer refers to as "the frat house." "The very first day, there were drugs and alcohol," she says. "There's no curfew, no residential manager, nothing. They made the distinction of taking a kid who couldn't hold it together and had to be on the highest level of restriction, and then transitioning him into all the freedom of a young college person. He had never demonstrated the ability to handle that."
Within months, Matthew opened a neighbor's car door and stole an electronic device.
"There's a huge chasm in the law," she adds. "You're a child, you're kept safe. Then it's like the Grand Canyon, and if you can't make that big a leap, if you're not the kind of person who can navigate the system of care on your own, there are no services for you. Some people need to be told to take care of themselves. I don't see why that's so hard to believe. They make us wear a helmet. There's all sorts of stuff we're mandated to do."
For now, Jennifer waits, predicting his fate. "No, Matthew is not mumbling to himself in the gutter—yet. Five years? How long will it take?"
For now, Matthew waits, too, behind prison walls. "We're not gonna bail him out because if we do, he's gone," Jennifer says. "So we let him sit in the jail and rot with no medication because there's no in-between services."
Gary says their plan is to visit him as much as possible and to try to convince him he needs help.
The Hoffs say they'll be able to sleep a little better for now, knowing their son is no longer on the streets.
"He's safe this time," Gary says. "He's safe tonight."
This article appeared in print as "Out of Care: New troubles await parents when their mentally ill child becomes a mentally ill adult."
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