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Out of the Shadows: Bringing Inclusion to the World of Mental Health

Original article written by The New York Community Trust

Protesters outside the Willowbrook State School in July 1972. Photo courtesy of Staten Island Advance. In 1996, Charlotte Fischman’s daughter missed her high school graduation because she was in a mental health institution for treatment. “Today,” Fischman said, “she is a competent, educated, empathetic young woman who lives independently and creates art, poetry, and prose based on her lived experience of mental illness.” Her daughter’s journey reflects the massive transformation in how the country has perceived and treated mental illness over the past 50 years, moving toward inclusion, empathy, and integration and away from stigma, shame, and isolation. The New York Community Trust has been pivotal in this movement by making grants to nonprofits to help advocates and health professionals bring unprecedented support and hope.

Community-Based Care

In the 1970s, “Question Authority” became the ethos for many during a broad national struggle for civil rights. Amid this tumultuous re-examination of the status quo was a growing “deinstitutionalization” movement to transfer people with serious and persistent mental-health issues from large, poorly run institutions to smaller, more effective and more humane community-based programs.

Deinstitutionalization was sparked by several developments: new pharmaceuticals helped ameliorate people’s symptoms; highly publicized scandals, such as the harrowing videos at the Willowbrook State School in Staten Island in 1972, exposed the horrible, overcrowded conditions in facilities that had previously been out of public view; and movies such as 1975’s “One Flew Over The Cuckoo’s Nest” created sympathy for patients and dramatized the inhumane care that was possible within a bureaucracy.

But as patients were discharged from large institutions over the next couple of decades, there was not sufficient capacity among community-based service providers.

Cynthia Dames, who in the 1980s served as director of the Coalition for Behavioral Health (then known as the Coalition of Voluntary Mental Health Agencies), recalled that dealing with these former patients became a public debate and political issue. “The ordinary citizen walking down the street would go four blocks to the subway and encounter a half-dozen individuals who were mentally ill and looking for donations for food, struggling to get appropriate clothing, or even hallucinating,” she said.

“We approached The New York Community Trust in 1991 for a grant to dig deeper and understand where folks were that had mental illness and what the state was financing,” Dames said. “We were a mental-health trade association that cared deeply about what was going on, but just living hand to mouth. It was very much a David and Goliath situation.”

With The Trust’s support, the Coalition organized focus groups in areas where large institutions were located. Its research into the details of the state’s mental-health funding found the lion’s share of dollars went to these institutions, although only a small fraction of the people with serious mental-health issues were treated there. Armed with compelling findings, the Coalition began a sustained and successful advocacy campaign to redirect funding to the people who needed it. In 1993, Governor Mario Cuomo signed the landmark Community Mental Health Reinvestment Act, which would redirect almost a quarter of a billion dollars to community-based care.

“The Trust funding was instrumental, game-changing,” Dames said.

With Trust grants, Dr. Henry Chung has widened access to mental-health care in Lower Manhattan.

“The Trust has always been very focused on underserved communities, which is incredibly important,” said Dr. Henry Chung, a former medical director of the Charles B. Wang Community Health Center (then known as the Chinatown Health Clinic). “We have to over-emphasize connecting underserved populations to services—and then that rising tide will lift all boats.”

Dr. Chung saw a troubling situation among Asian Americans: studies in the 1990s and his own professional experience showed they were among the most hesitant to seek mental-health assistance, and that older adults and young women had high suicide rates. The Trust gave a series of grants beginning in 1998 to the Center to include mental-health treatment in its community-based medical facility.Known as the Bridge Program, the clinic began routinely screening all patients’ mental health, regardless of the reason for their visit, which reduced stigma and caught undiagnosed issues. The mental-health staff even wore white lab coats to implicitly signal that their services were akin to other medical procedures.

With money from The Trust’s Mildred Anna Williams Fund, which is dedicated to helping girls and young women, the Bridge Program could focus particularly on their needs. It trained health professionals, educators, and teens themselves to recognize signs of distress and connect them to services.

Several years later, responding to a rise in suicides among college students, Dr. Chung, who subsequently headed up New York University’s student health system, used a Trust grant to create a program that integrated mental-health supports seamlessly across college health centers, a pioneering approach that was adopted at colleges across the country.

Just as the stigma around serious and persistent mental illness abated, there eventually was a greater acceptance of people seeking mental-health help in the wider community, in part as a result of a series of catastrophic events in the city.

Addressing Community-Wide Shock

After the World Trade Center attacks in 2001, the city was confronted by crises on several fronts. The Trust quickly partnered with the United Way and other donors to create the September 11th Fund to provide relief and recovery dollars.

Gisele Stolper, then president and CEO of Vibrant Emotional Health (formerly the Mental Health Association of New York), recalled that philanthropy, nonprofits, and the government scrambled to respond following the attacks.

“Nobody really knew what was going to happen,” she said. “But they knew that this was going to be terrible, so we had to act quickly. Within days people realized that the emotional trauma was just as great, if not greater, than the medical needs, because the numbers of those affected were exponential. There was a ripple effect throughout the city.”

To address this community shock and anxiety, The Trust’s September 11th Fund supported a wide-ranging public education campaign, letting people know there was no shame in seeking help for feelings of anxiety. Billboards and ads spread the word—even then-manager of the Yankees, Joe Torre, was featured in a television ad. The Fund helped Vibrant expand LifeNet, the city’s mental-health hotline, and more than 28,000 calls came in during the first six months after the attacks. Vibrant trained 6,500 medical professionals, educators, and clergy to respond to people struggling with terrorism’s emotional repercussions.

It was amazing how The Trust was able to use their resources to really focus on moving the system to become better and more responsive.” – Gisele Stolper, former president and CEO of Vibrant Emotional Health

The post-9/11 mental-health strategy paved the way for similar responses by The Trust and nonprofits when the city was hit with the financial meltdown in 2008, superstorm Sandy in 2012, and during the Covid-19 pandemic, when increased demand for services drove an unprecedented expansion of online care and training.

“We see many more people who are willing to reach out for help,” Stolper said, “and we have seen the kind of stigma associated with seeking help reduced. We still have far to go, but it’s really changed.”

“It was amazing how The Trust was able to use their resources to really focus on moving the system to become better and more responsive,” Stolper said. “The Trust was a catalyst for system transformation.”

After her teenage daughter’s mental-health issues arose in the 1990s, Fischman became a mental health advocate, becoming board chair of the National Alliance on Mental Illness-NYC Metro.

“In a world where funding mental health was unpopular,” said Fischman, who served on The Trust’s board in the 1990s, “The Trust was one of the few reliable mental health funders. They understood the field and what was needed.”

A New World for Families

In the early 2000s, The Trust made a series of grants to the Alliance to advocate for insurance reimbursement parity for mental health, which resulted in the federal Mental Health Parity and Addiction Equity Act of 2008. With the passage of the federal Affordable Care Act in 2010, much of The Trust’s work in mental health in the decade that followed included grants to nonprofits such as the Coalition for Behavioral Health, to help mental-health clinics acclimatize to Medicaid expansion, secure better reimbursement rates, and adapt to the world of managed care.

In 2020, The Trust sought to expand insurance parity with a grant to the Northeast Business Group on Health to be part of a national drive to improve behavioral health care access for people with employer-sponsored insurance. To guide systemic change, The Trust made a grant to the Bipartisan Policy Center for a 2021 report on integrating primary health care and mental health care and to promote its recommendations to improve care in New York and nationally.

“I think it’s a different world,” said Fischman. “There used to be so much shame associated with mental illness. People didn’t really talk about having a family member with it. The Trust helped move the field from the shadows to the forefront of public policy discussions.”

As acceptance of mental-health challenges coincided with large-scale systemic change, the impact was profoundly felt among patients and families. To support them, The Trust funded Alliance workshops where families could educate each other, and, more recently, the development of models where workshops are led by people with mental illness.

“I think there is now a recognition that the family members and loved ones have to be part of the process,” continued Fischman. “Everybody used to say there’s no recovery from serious mental illness, but there is a recovery—you can help a person with mental illness become the best that they can be.”

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