Ties That Enable: Community Solidarity for People Living with Serious Mental Health Problems

By Teresa L. Scheid and S. Megan Smith

Ties that Enable is written for students, providers, and advocates seeking to understand how best to improve mental health care – be it for themselves, their loved ones, their clients, or for the wider community. The authors integrate their knowledge of mental health care as researchers, teachers, and advocates and rely on the experiences of people living with severe mental health problems to help understand the sources of community solidarity. Communities are the primary source of social solidarity, and given the diversity of communities, solutions to the problems faced by individuals living with severe mental health problems must start with community level initiatives. “Ties that Enable” examines the role of a faith-based community group in providing a sense of place and belonging as well as reinforcing a valued social identity. The authors argue that mental health reform efforts need to move beyond a focus on individual recovery to more complex understandings of the meaning of community care. In addition, mental health care needs to move from a medical model to a social model which sees the roots of mental illness and recovery as lying in society, not the individual. It is our society’s inability to provide inclusive supportive environments which restrict the ability of individuals to recover. This book provides insights into how communities and system level reforms can promote justice and the higher ideals we aspire to as a society.

• Language: English
• Publisher: Rutgers University Press
• Release date: Aug 13, 2021
• ISBN: 9781978818774

Book preview

Preface

We direct this book to students, providers, and advocates seeking to understand how best to improve mental health care—be it for themselves, their loved ones, their clients, or for the wider community. We integrate our knowledge of mental health care as researchers, teachers, and advocates and rely on the experiences of people living with severe mental health problems to help us understand the sources of community solidarity. In this book we make the issues of community solidarity and social justice central and seek to elucidate why creating ties that enable is critical to solving our mental health crisis. Communities are the primary source of social solidarity, and given the diversity of communities, solutions to the problems faced by individuals living with severe mental health problems must start with community-level initiatives. Ties That Enable examines the role of a faith-based community group in providing a sense of place and belonging as well as reinforcing a valued social identity. The data we draw on juxtaposes the supports provided by this faith-based program with the supports provided by the more formal structure of community mental health organizations. We argue that mental health reform efforts need to move beyond a focus on individual recovery to more complex understandings of the meaning of community care. In addition, mental health care needs to move from a medical model to a social model that sees the roots of mental illness and recovery as lying in society, not the individual. It is our society’s inability to provide inclusive supportive environments that restricts the ability of individuals to recover. This book provides insights into how communities and system-level reforms can promote justice and the higher ideals we aspire to as a society.

Ties That Enable

1

The Current Impasse over Mental Health Care

President Kennedy’s Community Mental Health Centers Act of 1963 was propelled by a vision of community-based care and an end to institutionalized care for people living with serious mental illnesses. The failure of what is referred to as deinstitutionalization has been well documented (Mechanic and Rochefort 1990; Perry 2016), and we now live with the consequences of this failure. Mental health is front-page news, with rising suicide rates, an ongoing opioid crisis, and a series of high-profile mass shootings attributed to individuals with mental health problems. These events have resulted in various calls for reform. Most observers agree that our current mental health system is broken (Miller and Hanson 2016, 19), and it is very hard to point to a time when it worked well for those most in need of mental health care.

How many people face mental health challenges? The National Institute of Mental Health (2020) estimates that close to 20 percent (46.6 million people or 18.9 percent of the U.S. population) of those over age eighteen have a diagnosed mental illness. Of these, 4.5 percent (11.2 million) have what is referred to as a serious illness, such as bipolar disorder or schizophrenia. These serious mental illnesses are the third most common cause of hospitalization in the United States (National Association on Mental Illness [NAMI] 2020) and cost America $193.2 billion in lost earnings per year. A more troubling statistic is the rise in suicide rates, which have increased from 15 per 100,000 county residents in 1999 to 21 per 100,000 per county residents in 2016, representing a 41 percent increase.¹

Mental health care and treatment have been focused on an individualized approach that favors medical interventions over the social supports and community integration so necessary for persons with serious mental health problems (PSMH).² The gains we have seen in the past decades have to do with improved medications, whereas people facing the challenges of serious or chronic mental illness have fewer options with the decline in public funding (Mechanic 2006; Scheid 2016).³ The Affordable Care Act would have increased access for PSMH (especially via Medicaid expansion) and improved coordination of care. However, that door was never allowed to fully open, and we now with live with a mental health care system that is even more broken than in the past.

In the current era of what is referred to as post-deinstitutionalization (Scheid 2016), we live with competing demands for recovery and community integration, on the one hand, and increased restrictions on the rights of those with mental health problems, on the other. While there is little evidence that mental illness is the source of gun violence, restricting gun access and making involuntary commitment easier is politically expedient. It is much harder to reform and coordinate complex systems of care and provide viable social supports to individuals who are marginalized and isolated by the stigma of serious mental illness and the public label of being deranged by their illnesses. However, while we might all agree that mentally unstable people should not have easy access to firearms, we don’t have a way of defining who exactly these mentally ill people are (Miller and Hanson 2016, 217). Is depression a mental illness? Certainly not: the vast majority of us will experience a period of normal depression and/or anxiety in response to social stressors (Horwitz and Wakefield 2007, 2012). Substance abuse and a history of violence (often domestic abuse) are more predictive of dangerousness than a psychiatric diagnosis (Hiday and Burns 2010).

Central to the dearth of a community system of care has been stigma, with communities not willing to provide inclusive environments for PSMH. While current data is lacking, referring to the perpetrators of mass shootings as mentally ill monsters⁴ when there is no evidence that such perpetrators had a mental illness will certainly exacerbate stigma. There has been a great deal of attention placed on the role of public stigma (societal levels of stigma) and the acceptance or internalization of these negative cultural stereotypes, referred to as self-stigma. When a person accepts a marginalized identity, isolation and avoidance of others are likely, and can result in a lower level of subjective social status (Schnittker and Bacak 2013) where individuals feel themselves to be inferior to others. Identification with a socially devalued group (e.g., recipients of social services or mental health consumers) does not provide a source of long-term self-worth and can result in a downward spiral of increased isolation over the life course (Harkness, Kroska, and Pescosolido 2016). Consequently, many types of community programs (for example, clubhouses) have furthered the stigmatization of PSMH by separating them from the community and reinforcing a primary identity as that of a mental health patient. While separate supports for PSMH provide a sense of inclusion and belonging, they also result in exclusion from the wider community and reinforce social levels of stigma. Consequently, identification with a stigmatized community increases self-stigmatization and reinforces a lower sense of self-worth or social status for PSMH (Marcussen, Gallagher, and Ritter 2019). What is needed are services in the community that foster positive social comparisons with others living in that community, and that can lead to community solidarity. In this book we describe various sources of community supports and social ties that can provide a source of self-esteem and social status to PSMH. We begin with a brief review of the history of mental health care in the United States.

Cycles of Mental Health Care

This book focuses on individuals diagnosed with serious, persistent, or chronic mental illnesses, whom we refer to as PSMH. Other terms used through the decades of community care are patients (individuals in psychiatric hospitals), clients (referring to individuals in outpatient care), and consumers (a term popularized by the patients’ right movement). In addition to the long-term nature of their illness, PSMH face functional limitations and often need assistance with income, housing, and transportation to be able to live in the community. Public mental health care involves both medical and social welfare systems that are influenced by governmental programs and policies that provide funding for treatment, housing, education, employment, and a myriad of social support services.

One factor that influences the type of care a given society can provide to PSMH is the degree to which a given social group is communal as opposed to individualistic. Communal groups and societies have generally been more able to include individuals with severe mental illnesses and to provide needed social supports, whereas individualistic societies are more likely to exclude those with severe mental illnesses and to provide more coercive forms of social control (Horwitz 1982). Communal systems of care include home-based care as well as care in therapeutic communities. With family-based care, such as existed in colonial America, there is often no real distinction between mental and physical illness; individuals are simply sick and cannot support themselves. Families provide social supports, including a place to live and assistance with daily activities. Sometimes this care can be merely custodial (with extreme cases of PSMH being locking away in the attic), but generally families provide emotional supports and a sense of belonging. Other types of communal systems can provide therapy, such as the contemporary therapeutic communities of Italy, or Fountain House in New York City. These communities have emphasized empowerment as well as recovery, and serve as important models for advocates of patients’ rights to self-determination. Historically, while many forms of communal care persist, in the United States care moved from the more informal care of families and small communities to more formal systems of care in institutional settings.

There have been four major phases of formal mental health care in the United States, each shaped by different societal values, political preferences, and economic priorities. First was the phase of institutionalized care, dominant in the United States from the 1800s until the mid-1900s, during which the primary locus of care was the mental hospital. Second was a period of deinstitutionalization, with the removal of patients from state hospitals to the community (roughly 1950 to the 1970s). The third phase, dominant in the 1980s and 1990s, was community-based care with an emphasis on the integration of the diverse community services and supports needed for individuals with chronic mental illness to live in the community. The fourth phase began with the advent of managed care and an emphasis on cost containment and efficacy in the late 1990s, mental health systems began to undergo a process of privatization, with agencies contracting to provide services paid for by federal or state funds (Scheid 2004).⁵ While the time framework will vary, other countries have also experienced these major cycles of mental health care, with forms of institutionalized care persisting in most places, including the United States.

The story of institutionalization and deinstitutionalization has been told many times, so our consideration will be brief. As societies developed and underwent the early stages of industrialization with migration to the cities, institutionalized systems of care were developed. Mental illness was still not viewed as a disease, but as undesirable behavior that could be changed. Treatment was provided by psychiatrists in psychiatric institutions. As total institutions, mental hospitals provided for all of the patient’s needs, including housing, food, treatment, medical care, and social interaction. Such total institutions served primarily custodial functions, involving social control over patients’ behavior rather than therapeutic care. One of the first sociological critiques of such institutions was Erving Goffman’s Asylums (1961). He analyzed the conflict between staff and patient perceptions of the institution and described how patients needed to conform to medical definitions of their mental illness. We see the same general logic in contemporary discussions of normality where patients must first gain insight into their mental illness (that is, accept that they are not normal) in order to move beyond the institution to life in the community. Acceptance of medical intervention and medications is central to such insight and acceptance of the mental illness.⁶

Mental institutions received widespread social criticism for their primarily social control functions as hospital censuses grew throughout the first half of the 1900s and housed far too many individuals to be able to provide therapy. Hospitals were depicted in both the academic and popular press as being largely warehouses for the poor and immigrant insane. Deinstitutionalization began in the 1950s and was the result of the activities of three different groups: (1) fiscal conservatives who wished to save public monies, (2) civil libertarians concerned with patient liberty and rights, and (3) community health advocates. Psychiatric medications provided the real mechanism for the transfer of care from the hospital to the community. Over 400,000 patients were released from U.S. mental hospitals from the late 1950s to the early 1980s. Communities struggled to meet the demands for affordable housing, and many formerly institutionalized patients ended up homeless. While the number of patients residing in mental institutions declined significantly, the number of mental hospitals remained stable, and resources were never directed to necessary community supports.

Concurrent with deinstitutionalization was the demand for community-based care and integration. Mental health care moved from the domain of psychiatrists operating in hospitals to social workers in the community. Community mental health centers (as authorized by the Community Mental Health Centers Act of 1963) were supposed to develop the skills and competencies of PSMH so that they could live in the community; to provide social supports in the community; and to help reduce societal levels of stigma. These are all very lofty goals, and obviously require comprehensive initiatives. However, funding for community-based care never met even minimal demands for more services, and very few state mental hospitals actually closed. Instead, community mental health centers served primarily the needs of the worried well—those with acute mental health disorders such as depression or anxiety. The failure of deinstitutionalization was the inability to develop integrated systems of community-based care that would meet the many needs of those with chronic mental illnesses. Furthermore, communities were (and still are) unwilling to accept those with severe or chronic illness who need a variety of supports to live in the community. Readers may recall the NIMBY signs (Not in My Backyard) when group homes were proposed in residential neighborhoods. Stigma has remained a formidable barrier to community acceptance and tolerance.

Federal funding for community-based care began to decline in the 1980s with President Reagan’s Omnibus Reconciliation Act of 1980, although efforts to coordinate community care continued to be developed. At the individual level, case management and multidisciplinary treatment teams worked to integrate care for each patient. At the organization level, Community Support Programs were certified to provide for targeted coordinated care to those with chronic mental health care needs, generally following the criteria developed by Programs for Assertive Community Treatment (PACT). In the late 1980s, the Robert Wood Johnson Foundation funded the Program for Chronic Mental Illness, which sought to coordinate care at the systems level and included housing supports as well as necessary social services and medical care. While these efforts were all effective in their own way (and we will elaborate on these various mechanisms to provide PSMH with community care in the following chapter), funding for mental health care in the United States has never met the demand for these services.

Beginning in the 1990s both private and public systems of mental health care moved to managed care systems, with a greater emphasis on managing costs rather than care. Rather than provide integrated community-based treatment, systems of mental health care focused on controlling access to care. Ronald Manderscheid, at that time chief of Survey and Analysis at the U.S. Center for Mental Health Services, concluded that it is clear that mental health care has become a commodity under managed care, and that cost is the principal mechanism for assuring quality at present (Manderscheid et al. 1999, 412). Concerns were raised that an already vulnerable population would be placed at even greater risk for being managed to the bottom line rather than toward improved client outcomes (Durham 1995, 117). One clinician the first author interviewed in the early 1990s said of the challenges of managed care to mental health care that our society has defined success in recent times by productivity and numbers—a bottom line mentality which is opposed to the therapeutic process and dehumanizes the clinician as well as the patient" (cited in Scheid 2004,