When Maribel Gonzalez DeTemple learned her brother had been diagnosed with schizophrenia after his sophomore year at UC Berkeley, the news devastated her as much as their father’s death.

The family’s patriarch had been killed in a drug deal gone bad when DeTemple was 12. His four kids took a different path, each working their way to college, but Jose’s descent into psychosis derailed his success story.

“With Jose, I was in my 20s—I was very aware of the loss,” DeTemple said.

She and her sister began taking turns serving as Jose’s conservator, making decisions for their brother, who’s now 35.

For years, they fought to get him effective long-term care, at one point fleeing a facility that kept him so sedated he would be drooling.

La Casa, a locked rehabilitation center in North Long Beach, showed promise. Over the last year, Jose improved to the point where he could visit his sisters in the Bay Area on the weekends.

Then a pandemic hit.

Since the coronavirus began spreading in the U.S., the sisters have talked to Jose only through the payphone in Jose’s unit at La Casa. They try to explain it’s not his fault he’s in lockdown. They tell him it’s COVID-19 that’s forced a ban on visitors and limited patients’ movement to protect against the spread of the disease, which has thrived in close-quarters living situations like nursing facilities and jails.

Last week, the family learned the coronavirus had surfaced at La Casa.

Now they’re left with a choice: Do they pull their brother out of a facility where he’s getting valuable—and rare—long-term mental health care? Or risk him contracting a disease that’s killed almost 1,700 people in California?

“It’s an impossible situation,” DeTemple said.

Beds are ‘always full’

La Casa is one of a very limited number of psychiatric facilities in Los Angeles County that offer sustained inpatient rehab for people with debilitating mental illness.

There’s a severe shortage of this type of program in LA County. The 1,648 beds available to the local health care system are “always full,” according to a 2019 report to the County Board of Supervisors.

After a breakdown lands someone in the hospital for acute care, it typically takes more than two months before space opens up at a subacute facility like La Casa, the report says.

Jose is in a program that includes several separate locked units totaling about 190 beds.

Most of the patients there are under some kind of conservatorship, meaning relatives or the government are responsible for making decisions about their care, according to David Heffron, vice president of operations for Telecare Corporation, which operates La Casa and dozens of other facilities along the West Coast.

Patients can stay there anywhere from days to years, Heffron said. Many are in their 30s, and some have conditions like diabetes or HIV that make them more susceptible to COVID-19’s worst outcomes.

As the pandemic began, La Casa took precautions, Heffron said, barring visitors, taking staffers’ temperatures before they’re allowed on campus and screening residents twice a day for symptoms.

Employees all wear protective equipment, and they offer masks to residents, but it can be difficult to explain their necessity and the increased urgency of basic hygiene to someone fighting a serious mental illness, according to Heffron.

“Sometimes we have hand-washing parties,” he said.

Despite the precautions, Heffron said management knew it was probably inevitable that someone would catch the coronavirus.

About two weeks ago, a staff member notified La Casa that he’d tested positive for COVID-19, Heffron said.

Since then, La Casa has confirmed four more staffers have tested positive the disease. They’re mostly mental health care workers and technicians who interact directly with patients, according to Heffron.

On Tuesday, the first resident—a woman in Jose’s unit—tested positive.

Heffron said La Casa has been working with the Long Beach Health Department to get anyone who may have been exposed to COVID-19 tested, but he admits administrators made one mistake: Instead of notifying everyone with family members at La Casa, they contacted only those whose loved-ones they thought were at risk for exposure.

“We’re learning,” said Heffron, who explained the facility is now working to notify more than 200 people about the situation.

Without that voluntary notification, family members could be left in the dark.

Despite promising more transparency about cases at long-term health care facilities in the city, Long Beach is not providing many details about La Casa.

On Friday, the city started posting the number of cases at some facilities on its website, revealing the extent of outbreaks at some skilled nursing facilities and rehab centers.

However, a spokeswoman for the city said La Casa does not meet the city’s definition of a “long-term care facility.” The city hasn’t provided any public database showing COVID-19 was spreading at La Casa.

Maria Alvarado, a parent of a patient at La Casa, only learned of the situation through word-of-mouth.

Now she fears for her 32-year-old schizophrenic son, who she still calls her little boy.

“I’m in shock,” she said. “I don’t know what to do.”

By contrast, LA County provides a detailed list of COVID-19 cases at almost 200 institutions in its jurisdiction, including rehabs, mental facilities, nursing homes and jails.

Because Long Beach has its own health department, it sets its own rules for disclosure in this area.

The city would say only that it’s responding to “a small number of COVID-19 cases at La Casa” by helping them with testing and working with LA County to provide alternative housing for any infected patients.

Families left with no good choices

If family members decide to pull their loved-ones out of La Casa, there’s no guarantee they would be allowed back.

Anyone who leaves would likely have to go through an arduous assessment and placement process again, according to Brittney Weissman, executive director the National Alliance on Mental Illness of Greater Los Angeles.

“It’s very hard to find any residential place for anyone living with a mental illness,” Weissman said. “That’s putting it politely and easily.”

Heffron, the Telecare executive, said he understands each family must make its own decision about what’s best, but if a patient is pulled out, he can’t guarantee readmission. All of La Casa’s referrals are handled through the Los Angeles County Department of Mental Health, which still has its backlog of patients to contend with. If Jose leaves, there’s undoubtedly someone waiting just behind him to take his spot.

Over the weekend, DeTemple got a slim bit of relief when she learned Jose had tested negative for the coronavirus.

She’s still pushing for everyone at La Casa to be tested, not just those in units where COVID-19 was discovered. But for now, Jose will stay put.

“Pulling Jose out now, it’s basically like going back to him being off meds and destabilized during a pandemic,” she said.

While she’s stuck inside thanks to the state’s stay-at-home order, DeTemple thinks she could manage her brother’s care and keep him safe from COVID-19. But what happens after that, when a 72-hour span without proper supervision could send him spiraling back into psychosis?

“Right now, I don’t know what he would want,” DeTemple said.