Return to Asylum?
When I moved to Ukraine, everything I thought I knew about dealing with mental illness and supporting those who needed it became irrelevant. In Kiev, if you suffer from ADHD, too bad. Depression comes with the winter, those with anxiety should “toughen up”, and bipolar disorder is not a real thing that happens to real people.
In this city, there seems to be no distinct middle class; corruption and oligarch culture is rampant, making it impossible for the working class to succeed in business legally. I can safely make the generalization that at least 60% of Ukrainians in Kiev are either staggeringly rich or poverty-stricken.
This leads to large numbers of homeless people camping out in metro stations, several of them suffering from mental illnesses. While the younger generation of Ukrainians seem to care for the homeless enough to give them a few spare hryvnias from time to time, in general the attitude is one of every man for himself. I felt pangs of guilt every time I walked past one gesticulating to no one in particular or crying uncontrollably in a corner, but there were so many homeless and people around me were so hardened that I soon learned to ignore the pit in my stomach.
Philadelphia is now my new home. PC culture has taken some getting used to and mental health is, once again, a prominently discussed issue among my fellow students. The attitude towards the homeless, however, remains the same, despite the fact that 25% of America’s homeless suffer from some form of mental illness.
I wanted to change that narrative, so I decided to research schizophrenia and its effect on the homeless population of Philadelphia.
First, some context. Schizophrenia is a mental illness typically unconstrained to any specific set of symptoms. Rather, it is defined as a “major and severe psychotic disorder with significant impairment in mental functioning.”6 It renders the individual incapable of coping with the daily demands of life and unable to maintain relationships with close family and significant others.
Three main categories of symptoms establish a schizophrenia diagnosis: positive, negative, and cognitive. Positive symptoms are psychotic behaviors not normally observed in healthy people. Examples of these include hallucinations and delusions, such as paranoia. Negative symptoms, on the other hand, are disruptions to normal emotions and behaviors. These include thought disorders, such as loose associations and word salad, and emotional disorders, like apathy and mania. Cognitive symptoms generally manifest in the form of poor executive functioning and problems with working memory.6
According to testimonies of those once homeless and suffering from severe schizophrenia, a combination of positive and negative symptoms caused them to leave their homes, leave their loved ones, and seek solace in the streets. They often refused to enter shelters as well, citing similar reasons:
“Out here, I know all the voices are mine. If I go to the shelter, I don’t know who they belong to.”3
Many families are unable to financially support treatment of individuals with schizophrenia, exacerbating the problem and pushing these individuals to leave their homes.
Most homeless individuals suffering from schizophrenia or severe bipolar disorder did not become homeless by choice. Instead, they are a result of the recent wave of deinstitutionalization across the country’s state hospitals, and the subsequent lack of funding for supportive community programs.1 An appropriate example of post-deinstitutionalization treatment is that of the Philadelphia State Hospital at Byberry. I therefore chose to analyze a case study of the hospital and its effectiveness in targeting the needs of the mentally ill homeless population.
Colloquially dubbed Byberry, the Philadelphia State Hospital at Byberry was an infamous state hospital located in Pennsylvania, active from 1928 to 1990. It was notoriously overcrowded from the start and understaffed, with a long list of patient abuse allegations.
Ten patients died of neglect in the 1950s, prompting many patients’ families to lobby the government for reform.12 In response, in 1963 Kennedy called for community mental health resources. Still, in that decade, ten more patients died. Finally, 1987 saw the release of the initial Blue Ribbon Committee report and Byberry’s closure commenced.13
Over the next few years of deinstitutionalization, one patient froze to death and one patient committed suicide. The state government’s budget allowed $16 million for community programs supporting mental health, nowhere near the scope of what was necessary to treat so many newly discharged patients. As a result, in the year of 1989 alone, two discharged patients committed suicide. Governor Casey halted closure, yet one more soon after died.1
Upon the deinstitutionalization of Byberry, critics observed many negative effects and believed the community programs did not provide adequate medical attention for patients.
Critics viewed “concurrent substance abuse problems and concomitant homelessness, managed care compromising access to hospital treatment”12, and the tendency of discharged patients to end up incarcerated as common disadvantages of deinstitutionalization.
An initial 2,500 patients were discharged post-Byberry onto the streets without a sufficient support system. Governor Casey also pushed for psychiatric outpatient clinics, but underfunded them as only $19 million of the initial $30 million promised from the state’s budget was provided.12 The lack of funding worsened the quality of care and capacity of the clinics. Thus, 26 years later, Philadelphia is still reeling from the effects of deinstitutionalization.
Still, others argued that while these issues may have come from underfunding of mental health resources, they could have just as easily stemmed from “endemic problems such as poverty, racism, and social inequality.”12
Whether asylums are a necessary component of mental health care is controversial. An article written by Penn professors Dominic A. Sisti, PhD; Andrea G. Segal, MS; Ezekiel J. Emanuel, MD, PhD, makes the argument that “asylums are a necessary but not sufficient component of a reformed spectrum of psychiatric services.”11
“Deinstitutionalization has really been transinstitutionalization.”11
Deinstitutionalization, instead of allowing chronically mentally ill patients to receive proper individual care, instead resulted in said patients being moved to nursing homes and general hospitals, where they received a similar caliber of care at a higher cost. Others became homeless, and still more became incarcerated.14
Statistics show that “US jails and prisons have become the nation’s largest mental health care facilities”,11 with half the inmates having a mental illness or substance abuse disorder. Moreover, prisoners with serious mental illnesses are 2 to 3 times more likely than others to be re-incarcerated. This instigates a vicious cycle; individuals with serious mental illnesses do not receive the care they need and state-run programs waste funding when these individuals are re-incarcerated.14
While those against asylum reinstitution agree that the shut-down of state hospitals in the United States was initially ineffective, the similarities between the two perspectives end there. A press release published by the Bazelon Center for Mental Health Law lists several links to letters to the editor opposing the Penn professors’ article. Opposition to the proposal has a strong basis. Several organizations advocate for mental health by fighting against the proposal, citing that better funding of community services thus far proven effective would be prudent.14 Joseph Rogers, the National Policy and Advocacy Consultant for the Mental Health Association of Southeastern Pennsylvania (MHASP), tells the story of his experience in a state hospital:
“You’re warehoused. They get you up early in the morning, you’re fed by 7:00, they open up a day room and you sit there with a TV blaring and you don’t have control over what’s watched. You sit there. And luckily I found books and I’m a reader, so that saved my sanity. For the most part there was little to do and little interaction with anyone.”14
Other post-Byberry interviews have shown that patients strongly favor community programs, stating that they promote humane treatment of mental illnesses. According to former patient and mental health advocate Anna Jennings, a reliance on the medical model causes people to be “deprived of the opportunity to heal and to be seen.”12 Jennings strongly encourages psychiatric treatment that sees the whole person behind the stigmatized “crazed” behavior by asking what happened to the patient, as opposed to what’s wrong with the patient.12
Rogers too promoted alternative solutions to asylum, mostly in the form of programs such as peer-respite care. A study done in the 1990s proved these effective.
“According to the study, the discharged patients — who were the most seriously mentally ill and spent the most time at Byberry — each cost an average of $67,965 a year in the community-based system compared with a projected cost of $97,000 a year at Byberry.”1
The first of these programs, Project Home, does outreach programs geared towards individuals with schizophrenia and other severe mental illnesses. It also created programs for adult learning and workforce development, and is a major player in advocacy and public policy concerning homelessness.7 Project Home engages over 5,500 individuals each year in Philadelphia alone.7
The second of these programs is the peer-respite care, advocated for by Joseph Rogers. Peer-respite care is run by and for people who have lived the hospitalization experience. Individuals suffering from mental illnesses can get sanctuary in the community instead of being incarcerated or committed to a facility.4
Peer-respite also provides for the people who don’t have loved ones to care for them. Rogers made the argument that providing these individuals with an artificial family and using peers who have been trained to work one-on-one with individuals in crisis prevents hospitalization and often helps the individual avoid prison.14 This prevents further trauma for the individual, and saves money in the process.
Finally, Housing First pioneered supported housing programs in the Philadelphia area. These programs move homeless people into their own homes immediately within a community, dependent upon the individual’s sobriety and drug use.10 Housing First allows the individual a choice of neighbourhood and furnishings, and “scattered-site housing in Philadelphia engenders the individual’s sense of self-determination.”5
The government subsidizes the tenant’s rent contingent upon bi-weekly visits by Housing First to evaluate the tenant’s living conditions. However, the program emphasizes giving the individual privacy. As stated by a Housing First worker, the priorities for the organization are that the home is clean and the tenant eats and goes about his/her life.
“We don’t care if you are talking to your toaster because that’s nobody’s business.”5
Moreover, Housing First has proven to be a successful initiative even for those who believe a medical approach is necessary for treatment of schizophrenia and severe bipolar disorder. A study performed by Stefanie Rezansoff in 2016 has shown Housing First to be a successful initiative in improving adherence to antipsychotic medication. The study incorporated three randomization arms: congregate Housing First with on-site supports, scattered-site Housing First with Assertive Community Treatment (as is implemented in Philadelphia), and treatment as usual. Conducted over 2.6 years, the study showed scattered-site was by far the most effective in improving adherence to antipsychotic medication.9
The deinstitutionalization of Byberry initially failed to produce expected results due to a massive difference in the promised and delivered state funding towards community-based programs. Mental health professionals then disputed the merits of a medical approach to treating mental illnesses in the homeless, as opposed to the “People First” approach initially implemented by Anna Jenning’s psychiatrist. The importance of medical treatment for schizophrenia and severe bipolar disorder is thus still under consideration.
Over time, proponents of mental health in Philadelphia lobbied for more funding and successfully implemented three main community-based programs: Project Home, peer-respite care, and Housing First. Subsequent studies have shown a significant improvement in the well-being of individuals suffering from severe mental illnesses, and indicate the effectiveness of community programs in treating these individuals.
I urge you to become a part of the new wave of treatment. Volunteer a few hours of your Saturday afternoon with Project Home and make a lasting impact on someone’s life.
References Cited & Consulted
1. Final Asylum: The Closing of Philadelphia State Hospital. 1990. Web. 31 Dec. 2016.
2. Heller School For Social Policy And Management, Master Of Public Policy Capstone, Laysha Ostrow, and Spring 201. A Case Study of the Peer-Run Crisis Respite Organizing Process in Massachusetts (n.d.): n. pag. Web. 31 Dec. 2016.
3. “Liberty versus Need — Our Struggle to Care for People with Serious Mental Illness — NEJM.” New England Journal of Medicine. N.p., n.d. Web. 31 Dec. 2016.
4. Ludwig, Elisa. FOCUS ON PEER-RUN CRISIS RESPITE SERVICES (n.d.): n. pag. Web. 31 Dec. 2016.
5. “MHASP 215–751–1800 — Publications — People First 2016 Winter.” MHASP 215–751–1800 — Home Page. N.p., n.d. Web. 31 Dec. 2016.
6. National Institutes of Health. U.S. Department of Health and Human Services, n.d. Web. 31 Dec. 2016.
7. “Project HOME.” Project HOME. N.p., n.d. Web. 31 Dec. 2016.
8. “Return to Asylums? Let’s Not!” Mad In America. N.p., 23 Mar. 2015. Web. 31 Dec. 2016.
9. Rezansoff*1, Stefanie N., Akm Moniruzzaman1, Seena Fazel2, Lawrence McCandless3, and Ric Procyshyn4 And. “Stefanie N. Rezansoff.” Housing First Improves Adherence to Antipsychotic Medication Among Formerly Homeless Adults With Schizophrenia: Results of a Randomized Controlled Trial. N.p., n.d. Web. 31 Dec. 2016.
10. “RULES AND REGULATIONS.” PA Bulletin, Doc. №96–287. N.p., n.d. Web. 31 Dec. 2016.
11. Sisti, PhD Dominic A. “Improving Long-term Psychiatric Care.” Improving Long-term Psychiatric Care | Bipolar and Related Disorders | JAMA | The JAMA Network. N.p., 20 Jan. 2015. Web. 31 Dec. 2016.
12. Spikol, Liz. “They Survived Byberry.” Philadelphia Magazine. N.p., 29 June 2015. Web. 31 Dec. 2016.
13. “The Story of Byberry.” The Story of Byberry. N.p., n.d. Web. 31 Dec. 2016.
14. “What’s On TV.” Asylum for the Severely Mentally Ill | Voices in the Family | WHYY. N.p., n.d. Web. 31 Dec. 2016.