Mental illness: smashing the stigma 

Part 1 of a series

This is the first installment of a two-part series on mental health attitudes, research, and available services in the Rochester region.

For much of the last century, the subject of mental health has been locked away in the public psyche, to be dragged out only after tragic events seize national attention: the student who walks into school with a loaded gun, the mother who drowns her children in the bathtub, or the veteran who kills his family and then commits suicide after months of coping with post-traumatic stress.

But after years of being viewed somewhat disjointedly from physical health, mental health is finally being seen as equally important. Advances in medications and therapeutic approaches have made most mental illnesses treatable, experts say.

But promoting good mental health is a complex, multifaceted challenge, especially in lower-income communities where many individuals may not have health insurance and access can be difficult.

"In general, we have a good array of mental-health services in Monroe County," says Patricia Woods, president and CEO of the Mental Health Association's Monroe County office. "Where we're weakest is in prevention. The system is designed to have you get very sick first, and then we'll treat you. It mirrors in many ways the physical health system."

To address this, researchers at the University of Rochester Medical Center are pioneering new ways to deliver mental-health services.

While many people still visit a professional in the traditional clinical office setting, URMC has been creating treatment models built on a reverse premise: that mental health professionals need to bring treatment to the people.

Many of URMC's mental-health professionals are getting out of the medical center's offices and venturing into the Rochester community.

Dr. Eric Caine, chair of the URMC's Department of Psychiatry and a national specialist on suicide prevention, refers to this new model as an "alternate mental health system." Instead of running a community clinic, he says, the community is the clinic.

This first installment of a two-part series examines the state of mental health treatment in Rochester, what's being done to provide quality services to large numbers of people who need help but aren't getting it, and how new research may encourage healthier communities across the country.

Mental illness is increasingly widespread in the US, affecting roughly one in five adults every year, according to the National Alliance on Mental Illness. Nearly 46 million adults had a diagnosable mental illness in 2011, with depression and anxiety topping the list, according to NAMI.

But not everyone seeks or receives treatment. In a 2007 study, the US Centers for Disease Control found that only 38 percent of people with serious psychological disorders had received treatment that year.

Getting people into treatment has been hampered historically by the stigma surrounding mental illness. It is not only feared, but it also has an uncanny ability to co-exist with other health disorders.

Most troubling is the mistaken belief that mentally ill individuals are violent, dangerous, and poised to erupt without notice or cause, when research clearly shows that's not true. People suffering from mental illness are much more likely to be victims of violent crime than perpetrators.

The biggest challenge that professionals face is reaching individuals with severe and persistent mental disorders — schizophrenia, bipolar disorder, debilitating depression — since a mix of poverty and social stigma act as formidable barriers.

"The very nature of mental-health services delivery is challenging right now," says URMC's Caine. "If someone has money and insurance, they'll say 'I'm going to go see a therapist.' But it turns out that a lot of people don't have money. And even those who do have insurance, it doesn't cover a lot."

Added to this is the intricate nature of some mental illnesses. Individuals with severe mental illness may become paranoid or hallucinatory. Why would they seek help from a person they believe might hurt them?

"When it comes to mental disorders, there are a lot of individuals and families that are proactive and work collaboratively," Caine says. "But then there are many more patients who don't want to involve their families and burn their bridges with family and friends. This is the area where there is really a lot of need."

Usually they end up getting bounced around from the justice system to the health care system, Caine says.

"They go from the street to the emergency department," he says. "We'll set them up with an outpatient appointment, but they go back to the street, and then they wind up in jail. And back and forth they go. It's been very clear for some time that we needed to think in new ways about this challenge."

The result is that high concentrations of people with severe mental disorders end up in court, often clogging up the justice system. That's why many clinicians will tell you that jails and prisons are often a community's biggest distributors of pharmaceuticals.

"The courthouse is filled with people who are highly stressed when you think about it," Caine says.

People are there for domestic violence, divorce, child abuse, substance abuse, and other issues. They may not be severely sick in terms of schizophrenia or bipolar disorder, but if they had received treatment sooner, Caine says, they might not be there.

"And we don't want to see them get to the point where they're in the emergency room, either," he says. "I mean, emergency rooms are capable of addressing some really important things, but it can also point to the failure of not intervening earlier."

click to enlarge Emergency rooms and the courts are the most costly and ineffective way to treat people with severe mental disorders, says URMC's Dr. Steven Lamberti. - PHOTO BY MARK CHAMBERLIN
  • Emergency rooms and the courts are the most costly and ineffective way to treat people with severe mental disorders, says URMC's Dr. Steven Lamberti.

Dr. Steven Lamberti says the individuals who lack access or aren't willing to accept treatment — and end up cycling in and out of emergency rooms and the courts — usually don't improve. And the cycling is an enormous drain on limited funding.

Lamberti, a psychiatrist and professor who oversees URMC's schizophrenia research, is also the director of the Strong Ties Community Support Program.

The program uses a team of psychiatrists, psychologists, nurses, social workers, and therapists to provide comprehensive treatment to individuals with severe mental illness in Rochester. One of the group's specialties is a mobile treatment approach that Lamberti helped to develop, which often involves a combination of community outreach and acting as a liaison with the criminal courts.

"It's important not to have the criminal justice system and the mental-health system crash," Lamberti says, since both systems are already stressed. But avoiding this requires understanding the mechanics of both systems, he says.

"Why do some people get caught up in the revolving door of hospital-to-street-to-jail-to-hospital again?" he says. "And how do we use the best parts of both systems to break this?"

Key to breaking the cycle is developing alliances between courts and mental-health professionals, he says.

Lamberti uses the example of a homeless veteran who has a psychotic break with reality and is arrested for acting out.

"He goes before the judge who tells him he has been arrested for a mental-health misdemeanor and 'You could serve a year in jail or you could go for treatment,'" Lamberti says.

Even though the person chooses treatment, Lamberti says, he misses his appointments and then becomes what the courts refer to as "noncompliant."

The courts tend to view the patient as a troublemaker, he says, rather than focus on the illness or the rigidity of the criminal justice system.

Starting in 1995, URMC's psychiatric department began identifying these types of barriers to treatment and researching ways to remove them. Lamberti's group found that a team approach consisting of representatives from the justice system and the health community is needed.

In addition to establishing clear routes of communication, Lamberti says he often found that patients require extra follow- through on what are frequently basic needs.

For example, ensuring that court-ordered treatment is provided could mean going out into the community and literally locating patients, picking them up, and driving them to their appointments.

Unlike the typical managed-care approach which provides treatment when the patient shows up for a scheduled visit, Lamberti's approach removes barriers primarily by not making assumptions. For example, he doesn't assume the patient will remember the appointment or have transportation.

"We hold people accountable," he says. "We're not being soft on crime; it's being hard on the disease. When they accept treatment, it's a long-term commitment with monitoring."

Word spread about the URMC's work, and the research team began getting inquiries from other municipalities, police, and emergency rooms seeking information and training.

The research has been spun off into a business and soon the Rochester Forensic Assertive Community Treatment model or R-FACT will be available on DVD and workshops for training purposes.

URMC Associate Professor Catherine Cerulli's training in law and mental health converged as she began her research in the '90's on intimate and domestic partner violence. While there had been considerable research on the mental health of incarcerated offenders, less was known about the mental health of victims.

Cerulli says she was interested in knowing whether survivors of domestic abuse who feel healthier physically and mentally would make better choices in their lives, particularly around personal safety.

In 1999, Cerulli started the nation's first mental-health clinic located at a court site for victims of domestic violence. In keeping with the URMC Department of Psychiatry's mission of pushing clinical services out into the community, Cerulli says she saw that the courts — not mental health clinics — customarily deal with victims of violence.

People coming to courts seeking protection orders, divorce filings, and custody of children are in what Cerulli calls a "help-seeking mode." She recognized that it was a window of opportunity.

"What we often fail to realize is if you are a victim of violence and you've been physically, sexually, and emotionally abused with increasing frequency and severity, your mental health is sometimes seriously harmed by the perpetrator," Cerulli says.

She began her research by surveying hundreds of domestic-violence victims in Monroe County Family Court. Her team asked victims if they thought they had a mental-health disorder. Did they feel depressed or have symptoms of post-traumatic stress?

Not only did most victims confirm having mental-health disorders, many said they were so severe that they were having difficulty functioning.

Then they asked victims, "If you had mental-health services available here at court, would you utilize them?"

What Cerulli's research revealed is that even though the courts are not the ideal prevention tool against domestic violence, providing on-the-spot mental-health services to victims could help prevent intergenerational cycles of violence.

Cerulli says the demand for services in the court clinic far exceeds its capacity, so she is working with the Centers for Disease Control to create a suicide prevention curriculum that will be offered to domestic violence hotlines.

"We believe that crisis and domestic violence hotline workers can be suicide prevention specialists," she says. "So we've partnered with the national hotline in Texas where we've planned to launch this curriculum in two weeks. And we'll be studying it to see not only whether the advocates gain knowledge to change attitudes, but most importantly, change [suicidal] behaviors."

click to enlarge We need to do a better job promoting mental wellness, not just treating illness, says Ann Marie White, URMC assistant professor in psychiatry. - PHOTO BY MARK CHAMBERLIN
  • We need to do a better job promoting mental wellness, not just treating illness, says Ann Marie White, URMC assistant professor in psychiatry.

A third area of research, which is led by the URMC's Ann Marie White, an assistant professor in psychiatry, involves the cultivation of what some might call neighborhood therapists. Her office is responsible for mental-health promotion in the community at a time when many of Rochester's neighborhoods are beset by violence.

"What we do is stealth mental health," she says.

A task force consisting of the URMC, Monroe County Office of Health, and the Finger Lakes Health System was created to convene with other leaders in different areas of mental health.

The task force meets with representatives of schools, churches, community centers, and the justice system to help determine how the URMC and its partner agencies could be most effective, since they are not typically first responders.

White says the "Natural Helpers" program began in 2009 with a small grant. The program was based on earlier UR research focused on promoting good mental health, developing resiliency, and preventing violence by working with neighborhood barbers, priests, and small business owners. But White's team went one step further.

"We wanted to talk to the 'Miss Connies' on the block — the aunties, grandmas, and grandpas," she says. "What happened to these people? Are they still there? How do they want to support one another? Do they even want to support each other?"

The concept behind Natural Helpers, White says, is to reinvigorate "neighborhood networks" — conversations that once took place over the backyard fence or in the driveway while working on the car.

"We worked with individuals in the community as equal partners," she says. "We created a natural helper learning collaborative where they became helpers in a structured research way."

The helpers learned how to exchange ideas and knowledge in a way that can't occur in a clinical setting or an institution, White says. The Natural Helpers process wouldn't have gotten past square one, she says, if it wasn't built on familiar faces and trusting relationships.

"They would say things like, 'Oh, there's this house on the street where there's some really questionable things going on.' Then someone else would say, 'I know someone who would really like to live in this neighborhood if they could only find a place.'"

As soon as the house became available, White says, they had new neighbors ready to move in.

"Sometimes they would do the soft hand-off and they would say to someone who needs help, 'You need to go see this person because they are people you can trust," White says. "That person who needs help has this trusting relationship with the natural helper, and they'll do what they told them to do."

Reducing gun violence is especially pertinent to White's research. The goal of Natural Helpers is to infuse communities with positive mental health that makes resolving disputes through violence less prevalent.

But White resists the general public's tendency to lump gun violence with mental illness.

"We really have to take these cases individually and not use them as another sound bite, because the two really don't go together," White says. "And it only further stigmatizes people with mental illnesses."

There is a temptation, White says, to find a way of applying Big Data and analytics to identify the extremely small number of individuals who might commit some kind of horrifically violent act, and then intervene with preventive measures.

But it's extremely difficult to predict who will commit such crimes, White says, or which treatments would prevent them. White prefers taking what she calls the long-term view and to elevate the general health of a whole community.

"Yes, it's true that one person can do a lot of harm with a gun, a word, with their fist, or even with a gesture that's repeated over time," White says. "But a community that's concerned with safety needs to have a balanced approach, one that includes positive mental health and one that is focused on prevention as well — not just the reactive. We really need to be investing upstream."

In the next installment, we'll take a closer look at some of the personal experiences of individuals supporting a loved one with a mental-health disorder or managing their own illness.

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