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Slipping through the cracks

Five decades ago the United States’ mental health system shifted to protect patients’ civil liberties. But those protections leave few options to help people who don’t realize they need psychiatric care

Slipping through the cracks

(Art by Jonathan Twingley)

Patti Aguirre would have driven right past her daughter if someone hadn’t cried out, “There’s Kelly!” Aguirre turned around, and there she was—her then-30-year-old daughter Kelly Alatorre, standing in a food line at Skid Row in Los Angeles. It was December 2015, and Aguirre had not seen her daughter for two years. For months she had driven downtown LA looking for her, peering into alleyways and parks. 

Aguirre yelled out, “Kelly! Kelly!” She jumped out of the car and held her daughter and wept, from both relief and a broken heart: She couldn’t recognize her own child. Alatorre had butchered her once-beautiful auburn waves into uneven clumps. Her scrawny frame drowned in a man-size track jacket and sweats. Her face had shriveled beyond her age.

Aguirre knew something was wrong with her daughter since she was a teenager. It wasn’t just the behavioral problems or crystal meth and crack cocaine. She once explained to counselors: “I’m telling you, there’s something inside this little girl. This is not my Kelly.” When she looks into her daughter’s eyes, she sees the same empty daze she sees in her two brothers: All three suffer from schizophrenia. 

For Alatorre, that means hearing voices and spinning through paranoid delusions that send her fleeing to the streets. She says bizarre things: “I’m sitting here with you, but I’m not really with you—you know that, right? This isn’t me.” Using drugs has only exacerbated her mental illness. 

The Diagnostic and Statistical Manual of Mental Disorders (DSM) considers schizophrenia, along with severe bipolar disorder and severe major depression, a “serious mental illness” (SMI) because of how it debilitates normal functions, such as holding a job or housing. According to the National Institute of Mental Health, SMI affects about 4.5 percent of the U.S. population (about 11 million adults). Most SMI is treatable with early intervention. But the Treatment Advocacy Center found that about 40 percent of people with SMI don’t get treatment in any given year. About half of those with schizophrenia or bipolar disorder also have a symptom called anosognosia, which impairs their ability to understand that they have a mental illness. 

Anosognosia is why, when Aguirre begged her daughter to come home, she responded, “But Mom, I am home”—even though she had cigarette-butt burns on her arms and has suffered beatings while on the streets. Even though she has rotated in and out of jails, hospitals, and shelters for the last 10 years.

Aguirre can’t force her daughter into treatment. She has exhausted every means to help her, but she’s not getting better, nor does she want help. Aguirre has run out of options: “You’re just at the bottom reaching up and wondering, ‘Now where do I reach?’”

Art by Jonathan Twingley

(Art by Jonathan Twingley)

KELLY ALATORRE is the product of the nation’s broken mental health system. People who suffer from untreated serious mental illness are extremely vulnerable to premature death, suicide, and abuse, but state laws err on the side of protecting civil liberties. People like Alatorre can refuse services and treatment when they have little capability to help themselves. They often land in jail or on the streets.

What’s happening to Alatorre is happening across the nation. Many police department heads throughout the country advocate reforming the country’s mental health system because law enforcement officers usually respond first to psychiatric emergencies. Many departments now train their officers in crisis intervention—recognizing signs of mental illness and de-escalating tension. 

One of the most significant changes taking place nationwide is the expansion of assisted outpatient treatment (AOT), a court-ordered, community-based treatment for certain seriously mentally ill individuals who have already experienced multiple episodes of homelessness, arrest, incarceration, or hospitalization. Currently 47 states, including California, allow AOT, thanks to federal grants and studies that show high rates of success. But implementation can be inconsistent or inadequate, and AOT critics say it violates civil liberties and leads to heavy use of psychiatric drugs.

Meanwhile, family members tell me they feel unheard, unprioritized, misguided, and even blamed for a loved one’s disintegration. They run into HIPAA complications, lack of psychiatric beds and mental health professionals, and state laws that make it hard to get their loved ones professional care.

MORE THAN 150,000 people experience homelessness on any given day in California. In Los Angeles, about three homeless people die on the streets each day. Most leaders and advocates focus on poverty and the lack of affordable housing, both vital issues. But addressing those issues doesn’t address the mental illness component of homelessness. Official statistics say about one-third of the homeless have SMI and/or report substance abuse, but a Los Angeles Times analysis found that figure to be underreported: The paper’s analysis determined that about 51 percent of those living on the streets in LA County currently suffer from mental illness.

The spike in homelessness dates several decades back to the late 1950s when California, in the name of compassion, led the national movement to push mentally ill patients out of state mental hospitals. By the time Ronald Reagan became governor, California had already drained half its hospitals. Then in 1967, Reagan signed into law the landmark Lanterman–Petris–Short (LPS) Act, which prohibited involuntary hospitalization except under certain extreme circumstances. The LPS Act’s goal was to release patients into more humane, less restrictive “community care,” which never fully materialized. 

The LPS Act recognized that individuals have the right to determine their own lives. But problems arise when they lack the mental competency to do so. Under the LPS Act, a patient can only be involuntarily hospitalized for up to 72 hours. If doctors say the patient is “still a danger to others or themselves, or is gravely disabled,” the LPS Act allows an additional 14-day hold and, if still necessary, a 30-day hold. Schizophrenia can’t be fixed in three or 30 days. Families tell me they’ve seen doctors, citing the LPS Act, discharge someone who’s still delusional and treatment-resistant. 

That’s what happened to Alatorre: In 2015 alone, she was involuntarily placed in a hospital 15 times. The day they met in Skid Row, Aguirre convinced her daughter to check herself into a behavioral health facility that had just opened a 32-bed voluntary inpatient unit. Alatorre stayed for two weeks. She was diagnosed with schizoaffective disorder (schizophrenia with a mood disorder). 

Meanwhile, Aguirre sought to get her daughter conservatorship, a legal arrangement in which a judge appoints a responsible adult (often the county’s public guardian) to manage the personal care or financial matters of an impaired adult. If Alatorre is conserved, the guardian can force her into long-term treatment.

The LPS Act imposes very strict criteria for conservatorship: An individual with SMI must first undergo both an initial involuntary hold and a 14-day hold. Next, a treating psychiatrist must sign a conservatorship request to the Public Guardian office. For her to be conserved, doctors and the county must determine that Alatorre is “gravely disabled,” which state law defines as someone no longer able to provide for her own food, clothing, or shelter because of a mental health disorder. But the law also says an individual is not considered gravely disabled if a willing third party—a family member, a kind stranger, or shelters—are providing food, clothing, or housing. Psychotic behaviors or delusions are not enough to prove someone is “gravely disabled.” 

What’s more, each of California’s 58 counties interprets the definition of “gravely disabled” differently. Given that counties will bear much of the treatment costs—and many lack the necessary services—most counties are reluctant to pursue conservatorship. In 2019, California passed two bills creating pilot programs in three counties to grant conservatorship to more people. Those bills faced fierce criticisms from powerful organizations such as the ACLU and Disability Rights California, which say the bills violate civil liberties. So far, only the city of San Francisco has decided to implement the program, but conditions to qualify for conservatorship are still so narrow that it only applies to about 50 people in San Francisco (out of more than 8,000 homeless in the city).

Art by Jonathan Twingley

(Art by Jonathan Twingley)

While under the 14-day hold, Alatorre made a noose out of bedsheets and tried to hang herself. Doctors transferred her to another facility, where she sat on a gurney in the hallway waiting for two hours. Finally, a psychiatrist discharged her that day. Back to Skid Row she went.

Aguirre receives phone calls from strangers telling her things like: “I saw her at Seventh and Central. She’s really going nuts. She needs help.” Friends sometimes text photos of her daughter roaming the streets, asking, “Is this Kelly?”

Aguirre reads those texts over and over and wonders, “What do I do with this?” The last time someone texted her saying her daughter needed help, she texted back, “I’ve tried.” Each day, she checks the LA County Sheriff’s Department website to see if her daughter’s in jail. 

The last time Aguirre heard about Alatorre was in early December, when a health official told her Alatorre was in a hospital again after testing positive for COVID-19. At the time, Alatorre was still recovering from a muscle and blood infection that left her weighing 65 pounds. That’s all Aguirre knows—HIPAA prevented her from getting more information.

She used to pray many things for her daughter. Today, her prayer is simpler: “Please, God, keep her safe.” 

THAT’S ALSO A PRAYER Linda Privatte mutters for her brother James Mark Rippee each time she goes searching for him. I could feel her apprehension when I accompanied her in early 2020 in Vacaville, Calif. The time before, she roamed for four hours before giving up. Sometimes she doesn’t find him for several weeks. 

But that cold winter afternoon we found him curled on the sidewalk at a strip mall. He was bundled under two jackets, a black beanie, and ripped jeans soiled with dried mud. His hands and beard were smeared with grime and dirt. One eye socket caved into a pinch of flesh, while the other held a roving glass eyeball. Rippee is completely blind. 

“Hi Mark,” Privatte called out. Rippee roused, then called back, “Hi, Linda.” 

Privatte knelt next to him and poured steaming coffee into a plastic foam cup. “Want some hot coffee? Half sugar, half coffee, the way you like it.” She steered the cup into his hand. “I heard that you got robbed again. So you don’t have anything anymore?”

“Yeah,” Rippee said, noisily slurping his uber-sweet coffee. All he had with him was a rusty rod, which he uses as a cane. Privatte sighed. This happens every time: She stuffs a backpack full of clothes and supplies for him, and the next time she sees him, everything’s gone. 

Rippee has been homeless for 13 years. His sisters say he’s been beaten, robbed, cheated, and sexually assaulted on the streets. He has suffered from a traumatic brain injury (TBI) and schizophrenia for the past three decades after a motorcycle crash wrecked his life. But like Alatorre, Rippee denies he has a mental illness and refuses treatment. Because of HIPAA, his family doesn’t have access to his medical records. But they learned of his diagnosis one of the few times he signed a release of information.

Rippee once qualified for subsidized housing, but he couldn’t keep his housing or caretakers because of violent behavior. The last time he had housing was in 2007, when he set a fire on his porch. Rippee lost his Section 8 voucher for good then and has been homeless since. No shelters will take him because they’re not equipped for a mentally ill, blind man.

Neither is his family: Rippee’s mother is 80 and widowed. Privatte is legally blind—others have to driver her around to search for Rippee—and has heart problems. Her twin is bedridden from cancer and other health issues. For the last three years they’ve been asking their county, Solano County, for help to get public conservatorship.

Gerald Huber, director of Health and Social Services in Solano County, said Rippee’s primary diagnosis of TBI disqualifies him from most traditional services. Solano County’s “hands are tied” because Rippee has consistently turned down help, he said. There’s also hesitation to grant conservatorship. “We don’t want to get into a pattern of taking away a person’s rights just because that person doesn’t meet our idea of taking care of themselves,” Huber told me. “For quite a few homeless people, somehow they’re able to take care of themselves in a way that’s not traditional for you or me.”

In February, Rippee walked into traffic. A car knocked him 5 feet into the air, and he landed on the windshield. Rippee was hospitalized at a long-term post-acute care facility in Napa for eight months. For once, he had three hot meals a day, a bed, antipsychotic medication, and 24-hour supervision.

His sisters once again requested conservatorship, but Solano County again refused. But even if Rippee were to be conserved, Solano County has only 12 beds in its crisis stabilization unit, which isn’t suited for long-term care and is always filled. At the end of the day, resources are scarce, Huber said: “We have no suitable placements.” It’s not just Solano County. California’s state mental hospitals have an 800-plus patient waitlist.

In October, after 258 days at the facility, a van dropped Rippee back on the streets with nothing but a cane, a few sets of clothes, and a couple of months’ worth of medications rolling around in a plastic bag. He lost all that within days on the streets. Two weeks before Thanksgiving, Rippee finally agreed to go to a special residential care home. The sisters celebrated, knowing Rippee may likely walk back out into the streets as he has before.

When we drove away from our early 2020 visit with Rippee, Privatte told me, “Can you see why I feel bad leaving him? I live with that guilt. But I can’t take him home. He needs professional help.”

Sophia Lee

Sophia Lee

Sophia is a senior reporter for WORLD Magazine. She is a World Journalism Institute and University of Southern California graduate. Sophia resides in Los Angeles, Calif., with her husband. Follow her on Twitter @SophiaLeeHyun.

Comments

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  •  Wilebo's picture
    Wilebo
    Posted: Wed, 12/30/2020 04:49 pm

    Experience in both psychiatric and correctional settings. Outside of those institutions few are trained to assist the mentally ill. Though, well intentioned, those who make the rules for care do not have to work under them.

  • not silent
    Posted: Sat, 01/02/2021 04:13 pm

    I think that, unless they have personal experience with serious mental illness or they are close to someone with mental illness, it can be very hard for people to realize how complicated mental illness can be or how much suffering it causes for those who experience it directly and for everyone around them.  It can be very hard even for professionals to know how to help-much less family members and friends.  

    Mental illness encompasses a wide variety of conditions with varying severity.  Schizophrenia is generally very serious, as are some forms of bipolar disorder and certain personality disorders.  Depression and eating disorders can range from mild and limited to severe and life-threatening.  Anxiety can vary from mild, treatable forms to phobias that keep someone from ever leaving their home. And that's just scratching the surface. 

    There is no "one size fits all" solution for mental illness any more than there is for physical illness. I'm grateful there is less denial and that some of the stigma has decreased, but we still have  LONG way to go.

  •  Steve Dossin's picture
    Steve Dossin
    Posted: Sun, 01/03/2021 02:10 pm

    It similarly difficult to care for the disabled in Texas, and part of the problem is the difficulty getting what is called guardianship in Texas. In my situation, I want to be able to help Peggy, largely to prevent malpractice. She has already been declared incompetent (1990), but the court did not appoint a guardian of the person at the time. For many years, care providers would talk to me, even if they did not do all I asked. Then we ran into a hospital who would not talk to anyone that was not a guardian and that the patient did not call and provide a patient ID number. (Peggy can't do that due to her brain damage. She is in many ways a two-year old in a 72-year old body.) Even though Peggy asks for me constantly, they would not tell me what was going on with her, and when they discharged her in July, they would not tell me to whom she was sent. I got a court involved and it ordered the production of her records. The discharge paperwork had the address of a group home that was out of business at the time of the discharge, a first name of a contact, and the phone number of a bakery. She was lost for four months. Through God's grace, Peggy ended up at a hospital system that took care of her without knowing how to get paid for most of the time she was missing. God brought family and Peggy back together through a "chance" encounter. Even with a medical system full of malpractice, God can overcome!

  • GJ
    Posted: Mon, 01/04/2021 04:46 pm

    Great reporting Sophia! As a mental health professional, the MH issues are complex and varied to each individual, so very difficult to scale for a large population.  Substance use is very often a precipitating factor for some (if not, many) MH illnesses, often a trigger leading to long term issues, especially when substance use has been chronic due to impact on brain functioning. I have had many patients with a diagnosis of schizophrenia, bipolar, etc, who used substances early in life.  There is research to suggest even chronic marijuana use can be correlated to MH and violence but traditional medical/psychiatric industry tries to not emphasize due to general public acceptance (and legalization) of its use. Thank you for shedding light on this subject. 

  • JENNYBETH
    Posted: Mon, 01/04/2021 10:51 pm

    What heartbreaking stories. As we see homeless people and beggars, though we may debate with each other and within ourselves whether we should give them a handout, surely they do need prayer.

  • Greysmoke
    Posted: Fri, 01/08/2021 08:58 am

    My parents fought that battle in California for my schizophrenic sister through the 80's and 90's. In the old days of "mental institutions," it was relatively easy, far too much so, to have someone involuntarily committed for treatment. The pendulum made a decisive swing in the other direction -- too far, my parents felt. My sis needed treatment badly, but would simply not cooperate, attend doctor's visits, therapy, take her meds, etc. So we all watched her decline. She finally got to a place in her 50's where she would accept medication regularly. That helped her re-establish relations with her two children and grandchildren, though things continued to be difficult, and behaviors had become ingrained. She died on November 30, 2020, of COVID-19 while living in a nursing home. She had COPD from decades of chain smoking. It's very hard to care for a seriously mentally ill person. It's equally hard to find good treatment.... Thank you for this report.