May is designated Mental Health Awareness Month, and I’ve been reflecting on the personal experiences that have shaped my thinking about people with serious mental illness as well as the systems that have provided them care for the past 60 years.
These days, we have a better idea of what works and what doesn’t, from housing and
medications to job training and case management. Across the U.S., Permanent Supportive Housing is recognized as best practice for people with serious mental illness who have struggled to maintain stable housing. It seems simple, doesn’t it, to give someone who lives with a mental health issue a stable place to live, combined with case management and other services?
However, it hasn’t always been that way.
I remember the night in 1959 when my scout troop rode a school bus to Mendocino State
Hospital on the outskirts of town to perform a Christmas pageant. We sang before a packed audience of patients with mental illness in an old auditorium. At the time, mental institutions were performing frontal lobotomies and placing patients in strait jackets, and the sight of patients with partially shaved heads and bound upper bodies was a frightening sight for eight-year-old girls. That field trip begged for some basic education about mental illness, as the process of deinstitutionalization had already begun.
A few years later, our Aunt M. came to live with my family after she was discharged from
Danvers State Hospital in Massachusetts, one of several she admitted herself to over her lifetime. My beautiful aunt with bright blue eyes and a porcelain complexion received a diagnosis of schizophrenia when she was 18 years old. At our house, she spent a lot of time in her room writing about her hallucinations, even while she endeared herself to we children with lots of hot cocoa and excursions to movie theaters and ice-skating rinks. After her final hospital stay, she lived in subsidized housing, with only a pair of eyeglasses and a change of clothes to her name. I’ve often wondered if she had ever received a visit from a case manager?
After Reagan signed the Lanterman-Petris-Short Act in 1967 to end the practice of
institutionalizing patients with mental illness against their will, the process of
deinstitutionalization began in earnest, occurring in tandem with a civil rights movement that deemed all people deserved the freedom to live in less restrictive environments. According to the Journal of Law and Health, the number of patients living in state hospitals dropped from 535,000 in the ’60s to 137,000 in the ’80s. But affordable housing also disappeared, and vast numbers of previously institutionalized individuals and those who might have been admitted to institutions ended up living on the street or in single room occupancy hotels and temporary shelters.
Court decisions that limited our mental institutions’ ability to confine people against their will may have preserved individual freedoms on paper and even prevented wrongful hospitalization at the front end, but the process didn’t give much attention to establishing preventative services and treatment programs. Funding for housing and community-based services was abysmal.
In 1974, I accepted a practicum assignment from DHS to facilitate a “socialization group” of five middle-aged women who had recently been discharged from Oregon State Hospital in Salem. They lived alone in apartments scattered around the community. Their transition from institutionalization to independent living was fraught with barriers, ranging from a lack of understanding on how to manage personal finances, schedule medical appointments and prepare nutritious meals. I kept track of them after our group disbanded and noted that all had died 10 to 15 years post discharge, before age 65.
On a field visit to Dammasch State Hospital with my undergraduate counseling cohort in 1975, I observed that that those patients left institutionalized were living in an environment like the one I had seen at Mendocino State Hospital 16 years earlier: Inside the sparsely furnished day room, patients crouched in corners, or carried on conversations with invisible others, or chewed on their fingers and hands until they bled. Had the system given up, failing to understand that their patients were human beings who might have accepted the chance to improve their outcomes?
The National Institutes of Health reports that 65 percent of those with serious mental illness recover fully or partially. Imagine what we could do with increased financial and human resources and accompanied by transparent community education to usher the process along?
Take my family member. After being chronically homeless for several years, she now lives in her own tidy apartment and is taking steps toward self-sufficiency, thanks to ShelterCare’s Permanent Supportive Housing program.
ShelterCare employs best practices, applying a low-barrier approach: The PSH staff understand that people who are struggling with serious mental illness, and substance and alcohol abuse, need stable housing first, before they can take significant steps toward recovery and healing. Like other PSH programs, ShelterCare pairs housing with case management and other support services.
Our current challenge rests in the fact that the U.S., and our own Lane County, do not have an adequate supply of affordable housing, which has created long wait lists. What’s more, ShelterCare and other agencies across the country are experiencing a dire shortage of qualified human service staff. While many find the work meaningful and rewarding, the pay generally isn’t enough to retain good employees long-term.
As caring citizens, we need to advocate for people who often can’t advocate for themselves, by attending public meetings and writing letters to legislators, by stating our opinions about the need for affordable housing and services for marginalized populations.
We need to educate private citizens in multiple forums, from City Council meetings to civic clubs and faith communities, about the barriers people with mental illness face—because a lock ’em up mentality continues to this day. Negative community attitudes are a longstanding, pervasive barrier to mental health, according to the National Library of Medicine.
At the same time, advocates and human service workers need to discuss the fact that we will always have populations for whom we can’t remove the barriers—that is, people who aren’t willing or able to take the steps necessary to lead functional lives—even while remaining hopeful that 66 percent will improve if they participate in their own care. Remember: People with serious mental illness can and do get well. But we need to do our part to make that happen.