Inside the System: How We're Failing the Mentally Ill
The Red House has a tilted front porch and its red paint is chipped. The common room has tan linoleum floors and collages made from old calendars on faded construction paper. Upstairs, the small group room boasts slanted stucco ceilings and pale light. It’s too hot in the summer and too cold in the winter.
In the mornings, clients line up for 50-cent coffee, sit in a circle of folding metal chairs, analyze the Patriots’ game, and announce their goals for the day. Then they go to their scheduled groups: creative writing, healthy relationships, singing, anger management, or mindfulness. They were valedictorians and Harvard graduates. They played the violin in symphony hall and published poetry in anthologies. They were lawyers and activists and artists. They speak all the languages they can find on tape at the public library.
The Red House is a re-purposed Victorian off of Davis Square in Somerville, Massachusetts and the only remaining day treatment center in all of Medford, Arlington, Somerville, and Cambridge. Roughly 50 clients with a variety of mental illnesses — from dissociative identity disorder to severe depression — come to the Red House daily for treatment, structure, and a sense of community.
I was fresh off my first summer term at Smith College School for Social Work when I began my internship at the house. In class we learned from articles and PowerPoints. We wrote theoretical formulations about archived cases of clients with pseudonyms. Until then, their stories were endearing fictions.
It was at the Red House that I first encountered visible and chronic mental illness and the systemic ways we fail those clients.
I wasn't the only newcomer that fall. Orphaned from the recent closing of the Schiff day treatment center in Cambridge, a slew of clients joined the Red House in the weeks before I arrived. The house census nearly doubled.
It wasn't an easy transition. The Schiff clients reminisced about their old center. They talked about how they had better snacks and didn’t get a talking-to if their attendance rate dipped below 80 percent. Veterans of the Red House commented on the crowded groups, the longer line for coffee, people hanging their jackets on the wrong hook. The staff held it all and facilitated discussions about the awkwardness of the transition and the tensions inherent in integration. "We're all the Red House now," said one woman in a Monday morning community meeting. "Let's just skip to the part when it's we, not 'us' or 'them.'" By the time the holiday party came around in mid-December they were singing "We are the Champions" on stage together like it was their annual tradition.
The truth was that this man lost his treatment center, his place of structure, and peer support. He fell off his medications soon after, lost his housing, and found enough pills.
Clients had reason to be concerned about their own stability. In the winter, the higher-ups informed the staff that if the Red House did not increase its billable hours the house would go under. At community meeting, the staff encouraged the clients to make an extra effort to keep up attendance. The clients had heard this before; they knew what it meant. The house had been on the verge of collapsing a year prior —staff had even announced the closure to the clients.
Clients touched elbows in the small group rooms and pressed against the wall in the narrow hallways. Lunchtime bananas disappeared in seconds. The administrative assistant’s office became a "lounge" to accommodate overflow in treatment rooms; she moved to a cramped office down the hall, and the man who had worked there rented a room in the church next door.
"We feel angry and frustrated that so many services are shrinking," clients wrote in a collective letter to local politicians. "We have seen a lot of other programs and services close in our area, like the social club, the drop-in center, and even the Schiff Day Treatment in Cambridge. We feel like we don’t matter. Without this program, many of us would be deprived of our major support system. Coming to our groups helps us to stay out of the hospital and gives us the structure that we need. We work very hard each day that we are here and we want the program to stay open." Clients and staff signed the bottom of the page and dropped it at the post office. We never heard back.
Unable to fit more clients into groups without violating fire code, the staff held an after-hours meeting over Chinese take-out to rearrange the schedule to maximize billable hours. We overlapped the morning and afternoon programs. We raised the attendance requirements. The staff, many of whom had joined the Red House after their previous center shut down, clandestinely browsed for job openings. I wondered if I was on a sinking ship. I considered taking a leave of absence from Smith to think up another career path.
The trend is clear: treatment centers are shutting down. When they do close they leave staff unemployed and clients referred to the overcrowded and insecure programs still standing. Those who do not transition to another center lose access to treatment. Many former clients see an increase of symptoms of depression, anxiety, mood dysregulation, and psychosis. They seek care in inpatient units and nursing homes; become homeless; incarcerated; and ill.
The National Alliance on Mental Illness (NAMI) estimates the cost of untreated mental illness from in the U.S. as more than $100 billion each year. A study by the National Institute of Mental Health (NIMH) suggests the annual loss is closer to $193 billion. But the costs aren't cut-and-dry. NIMH director Dr. Thomas R. Insel writes of the study, "Lost earning potential, costs associated with treating coexisting conditions, social security payments, homelessness, and incarceration are just some of the indirect costs associated with mental illnesses that have been difficult to quantify."
In the past few years, state and federal funding for mental health services across the U.S. have drastically decreased. According to one NAMI reports, these services across the U.S. have lost at least $1.6 billion in general funds since 2009. In Massachusetts, funding for mental health service decreased by 8.1 percent between 2008 and 2012; a loss of over $55 million. NIMH estimates 1.8 million people — roughly 40 percent of Americans with a serious mental illness are not receiving treatment. NAMI calls it a national crisis. The organization's Massachusetts director, Laurie Martinelli, says these cuts are "unacceptable." She points out that the state is "not fulfilling its obligation to provide a full spectrum of services to people with mental illness."
The clients feel the effects of these cuts most acutely, and they often lack the resources and forum to advocate for themselves. Dr. Nancy Kehoe, a nun, psychologist, and facilitator of spirituality groups in day treatment centers for over 30 years, has seen the closing of several centers and the openings of very few. "The consequence for the clients is horrific," she says. "There’s no place for people to go, so many end up in the emergency room or on the street and stop taking their medications." She also notes that it's "not uncommon" for a client to take her own life following the closing of a treatment center, which for many clients is the only place where they feel a sense of connection and belonging.
"It just wasn’t possible to maintain the center anymore with the current level of funding from the state. I don’t know how any of the programs survive unless they’re floated by larger organizations," says Dr. Deborah Woodford of North Charles Inc., the organization that owned and closed Schiff. She calls day treatment centers "an endangered species."
The loss of federal Medicaid revenues for mental health services since 2011 has also influenced the demise of services and limited access. State budgets are now largely responsible for providing mental health care, and they cannot or choose not to allocate sufficient funds to community mental health. As a result, centers like the Red House struggle to remain viable. Jessica Dorsey, social worker and director of the Red House, says "the cost for maintaining day treatments and providing treatment has gone up, but MassHealth [Massachusetts’s Medicaid] continues to reimburse at the same rate. Reimbursement has not increased with inflation so we are asked to provide the same level of care without the necessary resources."
Medicaid's matching funds provide a modest cushion for Medicaid-eligible adults with mental illness, but it leaves those without coverage out in the cold. Hospitals and jails absorb the bulk of Medicaid-ineligible adults who have little access to outpatient mental health services. After funds were severed for mental health care for those without Medicaid in Phoenix, the city’s hospital emergency room admitted 40 percent more patients for psychiatric consultations.
Jails are overflowing with prisoners with mental illness and lack the training or resources to appropriately treat them. Over half of prison inmates are estimated to have mental health issues. Many committed crimes because they did not have adequate services to support symptom management.
Cost-benefit logic does not adequately explain the budget slashing to mental health services. Many day treatments barely break even, but they often prevent the exponentially higher costs of incarceration, hospitalization, and homelessness. The root cause is profound stigma: our society’s paradoxical fear and disregard of mental illness. This stigma is far from new, but it’s undergoing a renaissance.
The fear comes from our need to explain inexplicable violent acts — opening fire in a Colorado movie theater, pushing a stranger in front of the subway in Queens, or shooting classrooms full of first-graders in small-town Connecticut. The disregard comes from the conception that adults with mental illness are oblivious, broken, and beyond repair — that treatment is wasted on them.
This hopelessness for recovery stems from the culturally-ingrained, Big Pharma-fueled perception that severe mental illness is a lifelong prognosis. Yet with proper and consistent care, recovery and redeemed quality of life is possible and increasingly common. In Finland, a model of treatment based on communication and collaboration with providers, clients, and families called "Open Dialogue" has essentially cured 80% of patients with first-break psychosis with minimal, if any, medication.
What we should fear is the recipe of social isolation, chronic invalidation, and repression combined with substances and weapons in anyone, whether they have a capital "D"-Diagnosis or not.
While adults with mental illness are not the problem, untreated delusional and manic symptoms can be cause for concern. In centers like the Red House, professionals (social workers, mental health clinicians, occupational therapists and psychiatrists) screen for and are mandated to report threatening behavior. They give clients tools for symptom management and an outlet for expression. Eliminating structure, socialization, and professional attention increases the risks to themselves and to others. The absence of treatment will be ultimately more detrimental to communities, states, and the health of the nation.
The Red House remains open, but clients and staff are hesitant to take the security for granted. After my internship ended, I attended their annual September barbecue. Some of the clients had left, and the ones still there were surprised I remembered their names. Over potato salad and Boca burgers they asked me how I liked working on "bigger and better things" at my new internship. They asked if I missed working with crazy people. "You should come back and work for us once you get your degree," one woman told me. "You can start the committee to save the Red House." I said I’d start by writing a story.
*Some content related to specific clients have been slightly altered to protect their confidentiality.