Think you know Pilgrim Psychiatric? See how drastically it’s changed.

Nearly 14,000 people lived on the sprawling grounds of Pilgrim Psychiatric Center in the Brentwood of the 1950s, an era when lobotomies and induced comas were viewed as acceptable treatments for mental illness.

Today, the state-run Pilgrim — once the world’s largest psychiatric center — is, with its 273 beds, a fragment of its former self. Unlike in the past, its approach to treatment now focuses on getting patients out of the hospital rather than keeping them in, and residents have input on their own care.

“The expectation then was to go into hospitals and stay there for years,” said Kathy O’Keefe, executive director of Pilgrim. Today, she said, “We ready people for discharge the minute they walk through the door.”

Pilgrim opened in 1931 on 825 acres of what was then countryside to relieve overcrowding at other state-run institutions. “A City of the Insane It Grows Every Day,” read a 1938 Life magazine headline about Pilgrim.

Pilgrim sits on about 300 acres and is the third-largest of the state’s 23 psychiatric centers. The center only treats people with the most severe needs. Most are diagnosed with schizophrenia, bipolar disorder or schizoaffective disorder, which is a combination of symptoms associated with schizophrenia and a mood disorder. In addition, they typically have complicating factors such as severe emotional trauma or substance abuse, or a low IQ, which makes insight into their condition more difficult, O’Keefe said.

The imposing 80-year-old center has homey touches, such as patient-decorated bedrooms. Yet the seven-story brick building has an institutional feel. With two-thirds of residents arriving as involuntary admissions — most because they are legally considered a danger to themselves; some a danger to others — it is highly secure, with locked patient wings and an entrance with two electronic doors.

It costs an average of $973 a day to treat and house each resident, O’Keefe said, and state figures put the total inpatient cost for the 2019-20 fiscal year at about $87 million. Pilgrim had annual budgets of about $12 million in 1954 and 1955, using mid-1950s dollars, Newsday reported then. There are about 1,000 employees today, O’Keefe said, compared with the 4,000 that Newsday reported worked there in the late 1950s.

Factors such as the rise of psychiatric medications, a push for expanded rights for mentally ill people, and media exposures of abuse and neglect spurred a decadeslong drop in the population of long-term psychiatric centers in New York and nationwide, said Nancy Tomes, a history professor at Stony Brook University who’s studied the mental health care system’s changes.

Elizabeth Hancq, research director for the Arlington, Virginia-based Treatment Advocacy Center, which promotes expanded access to treatment, said that, overall, the migration of people out of long-term institutions and into communities was positive.

But, she said, deinstitutionalization went too far, and there are far fewer long-term psychiatric beds than needed nationwide. “The evidence for the need for this longer-term care setting such as state hospitals or other 24-hour hospital-level care is seen every day throughout the country” in one third of homeless people and one fourth of jail inmates with serious mental illnesses, she said.

Most Pilgrim buildings were torn down years ago. Others remain vacant, boarded up and defaced by graffiti. The state in 2002 sold 452 acres to developer Jerry Wolkoff for his long-stalled Heartland Town Square project, which would include 9,000 residential units and office and retail space in Brentwood. The project is on hold because of lawsuits and Wolfkoff’s inability to get Suffolk County approval for a sewer connection.

For patients who remained at places like Pilgrim, after the exodus from large institutions began in the 1950s, there often was “a deadening quality” to life, Tomes said, with drugs that left them in a stupor, a paucity of fulfilling activities and a warehousing of people rather than any real attempt at treatment to prepare them for life on the outside.

The portrayal in Hollywood movies like “One Flew Over the Cuckoo’s Nest” of numbed, overmedicated residents cowed into docility was largely accurate, said Joseph Rogers, who has bipolar disorder and has spent decades helping lead Pennsylvania-based mental health organizations. Rogers said he lived “kind of in a walking coma” at a Florida psychiatric center in the early 1970s.

Since then, drugs have improved and have less severe side effects, O’Keefe said. Therapists at Pilgrim today discuss medication with patients rather than coerce them to take it. Only in rare cases involving dangerous patients is a court order sought to forcibly administer medications, she said.

Likewise, patients “are signing off on their treatment plan,” said Stephen Berg, Pilgrim’s director of operations.

Patient Story

He heard voices. He once set fire to his home. Pilgrim helped him 'come back to the world, the real world'

When Larry Euell Jr. was 18, he was convinced voices coming out of the radio were talking about him. Three years later, while in a rage, he started a fire in his bedroom and almost burned down his family’s house.

That fire culminated with him being sent to Pilgrim Psychiatric Center, where four years of treatment left Euell, now 34, of Hempstead, happier and optimistic.

“What Pilgrim did was transition me to come back to the world, the real world,” he said.

While at Pilgrim from 2011 to 2015, Euell was diagnosed with paranoid schizophrenia. “I thought I was going to be institutionalized for the rest of my life,” he said.

He is now studying fashion design at Nassau Community College — something he never thought would have been possible.

College attendance is “very obtainable by many people with this disorder, more people than we can probably appreciate,” said Dr. Lisa Dixon, a professor of psychiatry at the New York State Psychiatric Institute in Manhattan and an expert on schizophrenia. “For some people, this illness is highly disabling, but there’s a significant number of people who have this illness who are able to live very fulfilling lives.”

Public perceptions of individuals with schizophrenia often are inaccurate, research shows. About 60% of Americans incorrectly believe violence is a symptom of schizophrenia, according to a 2008 survey commissioned by the National Alliance on Mental Illness, an advocacy, education and support group based in Arlington, Virginia.

“At Pilgrim, I had to learn how to actually put my coping skills into action…”

Larry Euell Jr.

In reality, Dixon said, even though people with schizophrenia are slightly more likely to commit violent acts than the general population, the large majority of people with schizophrenia are not violent toward others.

The scarring on Euell’s face and arms are lifelong markers of when he was at his nadir. The paranoia was intense, the depression deep.

“I thought people were out to get me,” he said. “I thought everyone was against me. I didn’t feel I had any love. I didn’t think anyone loved me, even though my mom was very loving and supported me the best she could.”

One day when he was 19, he stayed up all night writing random words on a piece of paper and then started talking gibberish to his mother. She panicked and called the Nassau County mobile crisis team, which comprises social workers and nurses trained to help people with mental health emergencies. Following that crisis, he spent more than two weeks at two community psychiatric hospitals and, upon release, was prescribed medication, which he didn’t take because it made him drowsy.

As his paranoia increased, he said he stopped hanging out with some friends, thinking they had it in for him. In November 2006, he took 30 days of prescribed medication he had stashed in his drawers. It provoked a frenzy, causing him to shout, throw and break things, as he ran around the Hempstead house he shared with his mother, grandmother and three younger brothers.

“Everything kind of got to me,” he said. “The paranoia, the distorted thinking, thinking people were out to get me.”

While trashing his bedroom, he knocked a lit incense burner onto the carpet, starting a fire that consumed his bedroom, he said. Firefighters pulled him out of the charred room.

Euell was arrested and pleaded not responsible by reason of mental disease or defect to second-degree arson and reckless endangerment charges, according to court records. He was sent to the upstate Mid-Hudson Forensic Psychiatric Center, which provides mental health treatment for people sent by court order. At the time, he had a diagnosis of schizoaffective disorder; the diagnosis was changed to paranoid schnizophrenia at Pilgrim.

He referred to his four years at Mid-Hudson as “my wake-up call.”

“That was the beginning of me realizing I had a problem, and I needed to find a way to deal with it,” he added. “Before that, I felt I was just a regular person mad at the world.”

After Mid-Hudson, he spent the four years at Pilgrim. Therapists at Mid-Hudson made him realize his paranoia was a symptom of an illness, and that others were experiencing the same types of feelings. Euell said Pilgrim taught him how to use that insight and the anger management and other coping skills he had learned at Mid-Hudson to prepare him to live outside the walls of a psychiatric center.

“I had to learn how to actually put my coping skills into action, to calm my anxiousness,” he said.

He began understanding how to not let distractions get to him.

“With the paranoia, it all kind of hits you,” he said. “You could be in a crowded area and [feel that] everybody is just looking at you or something. You just have to focus on what you’re doing and get your task done.”

Medications — he takes the antipsychotic drug Haldol — help but they’re not enough, he said.

Euell took poetry and art classes at Pilgrim and began writing music, which gave him an outlet for his creativity. He felt confident enough to set a goal of attending college for fashion design, and that motivated him to study for the GED diploma he earned at Pilgrim. He hopes to attend the Fashion Institute of Technology in Manhattan.

“I have a real good focus now,” he said. “It’s like a beam. Nothing can penetrate the beam.”

Read More

Treatment sometimes is introduced gradually, to gain the resident’s acquiescence, and peer specialists — people who are in recovery from mental illness and work at Pilgrim — sometimes will talk with residents about the benefits, Berg said. Therapy, for example, “is only productive if the person really wants to be participating,” he said.

Zoe Pasquier, 38, a peer specialist at Pilgrim for more than six years, said she talks to residents about how therapy, medication and support groups can be helpful. She said sharing her own story can “create a safe space for someone to be able to share things, so maybe they won’t feel as judged.”

O’Keefe recently stood in a kitchen inside Pilgrim that is part of the center’s “discharge academy,” a program of typically eight to 10 weeks in which residents are taught meal preparation, shopping, budgeting, resume-writing and other skills they’ll need to live independently or semi-independently.

The academy illustrates the shift in emphasis toward moving residents out of Pilgrim to smaller group residences where they can live in a less institutional atmosphere, or to apartments where they may live with others or on their own, O’Keefe said. Often, a group residence is a transitional step toward independent living. People upon discharge are set up with outpatient treatment, and Pilgrim staff check up on them, O’Keefe said. Most former Pilgrim residents continue to need medication and some type of outpatient treatment after leaving the center, she said.

Several decades ago, it was common for people to spend the rest of their lives at Pilgrim after admission, O’Keefe said, and even at the turn of the millennium there was “a culture of … no rush to move people through. We wanted to fix everything about them before they got out of our hospital. We just don’t think that way anymore.”

A typical stay at Pilgrim today is six to nine months. A small number still stay years, especially if they continue to present a danger to themselves or others, O’Keefe said.

Patient Story

She always feared Pilgrim from afar, but it helped her regain control after 11 suicide attempts

Even in the depths of the depression and uncontrollable mania caused by her bipolar disorder, Alarece Matos couldn’t imagine herself at Pilgrim Psychiatric Center, a place she feared while growing up a few miles away.

“When you look at Pilgrim on the outside and you’ve never been there before, you think of ‘mental institution’ — those movies, you think of people running around screaming and throwing their hands in the air and hurting each other,” the Middle Island woman said. “You don’t think of a place where you can go and get help.”

After attempting suicide 11 times, losing job after job, and obtaining largely ineffective care seven times at shorter-term community psychiatric hospitals, Matos credits Pilgrim with turning her life around.

“I’m looking forward to going back to work and this time being able to keep a job,” said Matos, who is living independently and studying to earn a medical office administration certificate at Hunter Business School in Medford. “With the coping skills I have now, I’ve learned how to be able to function in society the way I should.”

Matos, 41, said she lost 10 jobs, mostly in telephone customer service, after customer complaints of either gushing friendliness when she was manic, or rudeness when she was depressed, or after bosses and co-workers became fed up with excessive perkiness one day and intense negativity the next.

“The times I would show up to work manic, they would think I was on drugs,” she said. “And there were times I was so depressed, I would call in sick because I didn’t want to be around anyone, I didn’t want to get up. With all the call-ins, you lose your job, because you become unreliable.”

“When I tell someone I’ve been to Pilgrim, they’re like, ‘Oh, God, you’ve been to Pilgrim?'”

Alarece Matos

Her typical stays of three to four weeks at community psychiatric hospitals provided temporary help, but after she left, she stopped taking her medication and didn’t keep appointments with outpatient therapists.

In late 2016, Matos was traumatized when a woman she believes had an untreated mental illness tried to kill her at a Brooklyn homeless shelter where the two were living.

Matos said she woke up one night to find the woman on top of her with her hands around her neck, trying to choke her. She was able to fight the woman off, and a few days later, she checked into Stony Brook University Hospital’s psychiatric unit, where a therapist’s description of Pilgrim’s approach to treatment dispelled Matos’ longtime fears about the center. She voluntarily checked in.

Matos said a key reason her six months at Pilgrim succeeded, where previous professional treatment failed, is peer specialists, people who work at Pilgrim who themselves have a diagnosed mental illness. They are trained to help those just entering recovery or early along in the process.

She could relate more to peer specialists than therapists and psychiatrists.

“It made it a lot easier because it wasn’t just someone saying, ‘Aw, you’re going to be OK,’ ” Matos said. “It’s someone actually telling you, ‘It’s going to be fine. I’ve been through this; it takes time, but you can do it.’ “

The emergence of peer specialists is one of the biggest changes at Pilgrim, said Kathy O’Keefe, the center’s executive director. As recently as two decades ago, the common thinking among mental health experts was that someone with a mental illness likely couldn’t help another person with a psychiatric disorder, O’Keefe said.

“Now, there’s an acknowledgment that having a community behind you keeps patients from feeling isolated,” said Stephen Berg, Pilgrim’s operations director.

Matos said the medication she takes — Latuda and Lamictal — and therapy have helped control her mania and depression. But they haven’t entirely eliminated them. Pilgrim taught her ways to cope.

“If I feel my mania coming on, I go for a walk” or call a family member, a former Pilgrim resident or peer specialist, she said.

While at Pilgrim, she began painting and meditating to help reduce anxiety and depression.

Matos regularly confronts misunderstandings about Pilgrim and mental illness.

“When I tell someone I’ve been to Pilgrim, they’re like, ‘Oh, God, you’ve been to Pilgrim? So you’re crazy?’ ” she said.

The stigma of mental illness — and of psychiatric centers such as Pilgrim — prevents many people from acknowledging even to themselves that they need help, Matos said.

Yet without Pilgrim, Matos believes the mania, depression and anxiety that she has struggled with for years would still be controlling her instead of her controlling them.

“Pilgrim helped me see it’s OK to be who you are,” she said. “It’s OK if people don’t understand. As long as you know who you are and you want to get better, that’s what’s important.”

Read More

A small percentage of Pilgrim patients arrive via the courts, and most are people who committed nonviolent offenses such as trespassing and are judged incapable of understanding their crimes, O’Keefe said.

The majority of involuntary admissions involve people deemed a danger to themselves — either because they may harm themselves deliberately or because self-neglect could lead to infections, homelessness or other problems, O’Keefe said. Two psychiatrists must approve involuntary admissions, most of which are transfers from community psychiatric hospitals.

Fewer than 20% of patients are considered a danger to others, and various strategies are used to stabilize them, including medications and in some cases temporary stays in a special treatment unit, O’Keefe said.

About a quarter of Pilgrim patients are black, much higher than the 9% of Long Island residents who are black. Currently, 63% of Pilgrim patients are white, 9% are Hispanic and less than 1% are Asian or American Indian, O’Keefe said. Those numbers can fluctuate, she said.

Nationwide, black adults are twice as likely as white adults to receive inpatient mental health care, according to a 2015 report by the federal Substance Abuse and Mental Health Services Administration.

Dr. Danielle Hairston, director of the residency program in psychiatry at Howard University in Washington, D.C., and president of the American Psychiatric Association’s Black Caucus, said that’s partly because black people with mental illness are less likely to seek treatment early on, and that can lead to worsening symptoms and inpatient admission. The reluctance stems from factors such as the dearth of black psychiatrists who black mentally ill people can relate to and generations of mistrust due to a long history of unjustified institutionalization of black people, she said.

In addition, Hairston said, studies show that a black person with similar symptoms of mental illness as a white person is more likely to be seen as psychotic, and aggressive and agitated, and in need of inpatient care — evidence of conscious and unconscious bias among psychiatrists.

The 273 patient beds at Pilgrim are less than half the 610 beds in 2008, but there are no plans to further reduce the number of patients, O’Keefe said.

Rogers thinks large institutions like Pilgrim should close and be replaced by small residences. People in large psychiatric centers are typically “forgotten,” don’t get adequate care and live under burdensome restrictions, he said.

“If somebody needs long-term support, that should be done in the community,” he said.

But Hancq contends it is not economically feasible for small community-based residences to have the specialized staff and expansive treatment programs of large state psychiatric centers.

At Pilgrim, there are dozens of classes tailored to individual needs, such as courses on how to become more assertive, how to make friends and how to control anger and avoid conflict. There are specialized programs, such as for people with a compulsion to drink so much water it can kill them.

A recreation center aids in therapy, as does a farm with goats, sheep, a llama, guinea pigs and rabbits, Berg said.

“Sometimes when we have nonverbal clients who have trouble forming associations, they learn to interact and form a relationship with the animals,” Berg said. “Animals are nonthreatening and they don’t yell back at you. Psychologists use that to form human relationships.”

A multisensory room with flashing lights, loud music, plastic tubes with bubbly water, a rocking chair, a disco ball and an “aroma fan” that emits calming scents is used especially for patients who are not responding as well to other treatment, he said.

Patients choose the type of music to play — or whether they even want music — and how much stimulation they want. There are drums to bang, wheels to turn and balls to squeeze for those who can benefit from it. The room’s features can make patients less anxious and more receptive to treatment, Berg said. Psychologists observe the patient, and they are ready to talk when the patient is, he said.

Jayette Lansbury, president of the Huntington chapter of the National Alliance on Mental Illness, a Virginia-based group that advocates for people with mental illness, said treatment at Pilgrim has benefited many people.

“I’ve heard nothing but good reviews from the patients’ point of view and their families’ point of view,” she said. “It’s a caring environment.”

Pilgrim and mental health through the decades