Ties That Enable: Community Solidarity for People Living with Serious Mental Health Problems 9781978818798

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Ties That Enable

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

TERESA L. SCHEID AND S. MEGAN SMITH

Rutgers University Press New Brunswick, Camden, and Newark, New Jersey, and London

 Library of Congress Cataloging-­in-­Publication Data Names: Scheid, Theresa L., author. | Smith, S. Megan, author. Title: Ties that enable: community solidarity for p­ eople living with serious ­mental health prob­lems / Theresa L. Scheid and S. Megan Smith. Description: New Brunswick, NJ: Rutgers University Press, [2021] | Includes bibliographical references and index. Identifiers: LCCN 2020044472 | ISBN 9781978818750 (paperback) | ISBN 9781978818767 (cloth) | ISBN 9781978818774 (epub) | ISBN 9781978818781 (mobi) | ISBN 9781978818798 (pdf) Subjects: LCSH: Mentally ill—­Care. | ­Mental illness. | Community ­mental health ser­vices. Classification: LCC RC439.5 .S34 2021 | DDC 616.89—­dc23 LC rec­ord available at https://­lccn​.­loc​.­gov​/­2020044472 A British Cataloging-­in-­Publication rec­ord for this book is available from the British Library. Copyright © 2021 by Teresa L. Scheid and S. Megan Smith All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. The paper used in this publication meets the requirements of the American National Standard for Information Sciences—­Permanence of Paper for Printed Library Materials, ANSI Z39.48-1992. www​.­r utgersuniversitypress​.­org Manufactured in the United States of Amer­i­ca

 We dedicate this book to the many advocates who work so tirelessly to improve the lives of ­those with serious m ­ ental health prob­lems.

Contents Preface ix 1

The Current Impasse over ­Mental Health Care

2 Looking Back: Reflections on the Real­ity of

Community-­Based ­Mental Health Care

3 Being a “Right Person”: Social Ac­cep­tance in a

Faith-­Based Program

4 ­Doing the “Best” We Can: Developing Social Relationships

and Overcoming Isolation

5 Us and Them: Confronting Recovery in the Face

of Marginalization

6 ­Going Backward: Are We Doomed to Repeat the Failures

of the Past?

7

Working ­toward Community Solidarity and Social Justice

Epilogue

1 17 36 52 66 86 103 116

Acknowl­edgments 119 Notes 121 References 125 Index 135

vii

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.

ix

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 ­ ese events have resulted in vari­ous calls for reform. ­mental health prob­lems. Th 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 m ­ ental 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 t­ hose over age eigh­teen have a diagnosed ­mental illness. Of t­ hese, 4.5 ­percent (11.2 million) have what is referred to as a serious illness, such as bipolar disorder or schizo­phre­nia. Th ­ ese 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 1

2  •  Ties That Enable

­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 t­ hose with ­ ental ­mental health prob­lems, on the other. While t­ here is l­ ittle evidence that m 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 v­ iable 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 m ­ ental 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 monsters”4 when t­here is no evidence that such perpetrators had a ­ ill certainly exacerbate stigma. Th ­ ere has been a g­ reat deal of ­mental illness w 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 m ­ ental 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

The Current Impasse over M ­ ental Health Care • 3

stigmatization of PSMH by separating them from the community and reinforcing a primary identity as that of a m ­ ental 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 o­ thers 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 m ­ ental health care in the United States.

Cycles of M ­ ental 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 pop­ u­lar­ized 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 t­ hose 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. Th ­ ese communities have emphasized

4  •  Ties That Enable

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. ­ ental health care in the United ­There have been four major phases of formal m States, each s­ haped 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 t­ hese 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 w ­ ere 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, m ­ ental 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 h ­ oused far too many individuals to be able to provide therapy.

The Current Impasse over M ­ ental Health Care • 5

Hospitals w ­ ere 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 w ­ ere released from U.S. m ­ ental hospitals from the late 1950s to the early 1980s. Communities strug­ gled 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. M ­ ental health care moved from the domain of psychiatrists operating in hospitals to social workers in the community. Community m ­ ental health centers (as authorized by the Community M ­ ental Health Centers Act of 1963) w ­ ere 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 m ­ ental health centers served primarily the needs of the “worried well”—­those with acute m ­ ental 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 t­ hose with chronic m ­ ental 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 w ­ ere 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 w ­ ere certified to provide for targeted coordinated care to t­ hose with chronic m ­ ental health care needs, generally following the criteria developed by Programs for Assertive Community Treatment (PACT). In the late 1980s, the ­ ental Robert Wood Johnson Foundation funded the Program for Chronic M Illness, which sought to coordinate care at the systems level and included

6  •  Ties That Enable

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 m ­ ental health care in the United States has never met the demand for t­ hese 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 m ­ ental 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 u­ nder 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 t­ oward 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, 2). The commodification of care produced even greater system-­level fragmentation (Dobransky 2014; Scheid 2004). Furthermore, ­mental health care increasingly relied on psychiatric medi­cations to control the symptoms of ­mental health prob­lems, with less and less emphasis on therapy or rehabilitation. ­Mental health care has been medicalized and criminalized, with few individuals receiving the social supports necessary for their social welfare needs to be addressed. With the decline of public sector m ­ ental health programs, ­those with serious ­mental illness find themselves homeless (46 ­percent of homeless adults have a serious ­mental illness and/or substance abuse disorder) or in jails or prisons (20 ­percent of state prisoners and 21 ­percent of jail prisoners have a “recent history” of ­mental disorder) where they do not receive adequate treatment for their m ­ ental health prob­lems.7 With the criminalization of the mentally ill, care has returned to the worst excesses of institutionalized care, with a primary focus on social control. At the same time, we utilize the framework ­ ental health care system w ­ ill proof “recovery” to capture what we hope our m vide. What does recovery mean?

Demands for Recovery The apparent po­liti­cal consensus over recovery is noteworthy, given the many debates over treatment for ­mental health prob­lems. Federal-­level initiatives such

The Current Impasse over M ­ ental Health Care • 7

as the 1999 ­Mental Health: A Report of the Surgeon General and the 2003 President’s New Freedom Commission on ­Mental Health set recovery as a standard for ­mental health reform. Recovery has become an established princi­ple in other countries as well, although the lack of a clear definition and guidelines for implementation remain formidable barriers to its realization in practice (Watson, Adams, and Jackson 2016). The National Consensus Conference on ­Mental Health Recovery was convened in 2005 by the Center for ­Mental Health Ser­vices and involved over one hundred consumers, advocates, providers, and researchers who developed a definition of recovery and articulated ten princi­ples of recovery (Anthony and Ashcraft 2010). Th ­ ese include such goals as self-­direction, individualized treatment, empowerment, peer support, re­spect, responsibility, and hope (Anthony and Ashcraft 2010, 467). It is not surprising that so many espouse recovery as a worthy aspiration; the issue is ­whether recovery can actually be fostered within our current system of ­mental health care or in ­those communities where individuals with serious ­mental disabilities would like to reside. Recovery builds on the ideals of consumer empowerment and is based on an advocacy model first introduced by Rose and Black (1985). While a focus on patient rights was certainly impor­tant to the original community care movement, empowerment pushed the idea of client autonomy to emphasize the right of individuals to advocate for their own care and assume control over the direction of their own treatment. Some advocates of empowerment even rejected professional intervention, building upon critiques of both biomedical and psychosocial rehabilitation models that ultimately wanted clients to conform to professional definitions of ­mental health (Paulson 1992). At the most extreme ­were characterizations of therapists as “the rapist.” However, the concept of empowerment has evolved from in­de­pen­dence from the system to choice within the system (McLean 2000, 837). While recovery is certainly not essential for empowerment (one can advocate for ser­vices and not seek recovery), recovery has become the dominant normative demand—­articulated by stakeholders, advocates, and consumers. Recovery involves both a reduction in psychiatric symptoms (recovery from illness) and recovery within illness, with clients determining their quality of life (Dobransky 2014). The development of psychosocial conditions for leading a fulfilling life (such as hope, connection, and empowerment) as well as the external conditions that allow individuals to lead a productive life are necessary for recovery (Jacobson 2004; Jacobson and Greenley 2001). As such, “recovery” is a fairly broad and ambiguous term that can serve as an umbrella for many dif­fer­ent kinds of ser­vices. Jacobson (2004) describes how recovery has been used as a slogan by diverse groups promoting dif­fer­ent ideological positions; as such it can serve as an “optimistic rhetorical device” (Spandler and Stickley 2011, 560). Recovery can mean an expanded ser­vice model, as once an

8  •  Ties That Enable

individual’s symptoms are stabilized they ­will have an increased need for the social supports and skills-­building programs (Neugeboren 1999). However, recovery can also mean reduced reliance (and cost savings) on ser­vice systems when defined as meeting certain ­limited functional goals. Recovery can be used as a yardstick for improved client outcomes (Spandler 2014), with ­little commitment to creating the kind of therapeutic environments where recovery can be fostered and maintained (Spandler and Stickley 2011). A summary assessment of recovery is provided by Watson, Adams, and Jackson (2016), who conclude that not only does recovery lack a common definition, but that ­there have been few guidelines on how to implement recovery in practice. Recovery fundamentally involves improved quality of life, which is a social, not a clinical, outcome (Keith and Keith 2013). Yanos, Knight, and Roe (2007) provide a critical theoretical framework for understanding recovery that includes both the role of social structures and individual agency. They argue that the personal agency of t­ hose with severe m ­ ental illnesses (such as adopting coping mechanisms and having the ability to set and strive for goals) is constrained by current social structures, including poverty, l­egal restrictions, a lack of affordable housing, distressed neighborhoods, and the routinized practices of stigma and discrimination, which in turn create further stress, hopelessness, and anomie. Many individuals with severe ­mental illnesses are isolated in the external social community, with few friends or social supports (Keith and Keith 2013). Given the realities of the larger external environment that marginalizes PSMH, clients may choose dependence on the ser­vice system where they are accepted and provided with scarce resources (Dobransky 2014; Schutt and Goldfinger 2011). However, such choices are not feasible when ser­vices and resources are ­limited or constrained. One place where individuals living with chronic or serious ­mental health prob­lems may be welcome are faith based community programs, although t­ here has been relatively ­little attention placed on the role of religious communities in providing social supports for PSMH. Leavey, Loewenthal, and King (2007) highlight the importance of the community building and cohesion in which clergy and faith-­based organ­izations tend to quietly engage the long-­standing health and welfare patchwork provided as part of ministry, thereby meeting the gaps that the government leaves ­behind or is unable to fill. Some faith-­based organ­izations view ­mental illness as a moral or spiritual prob­lem and therefore want to take responsibility for providing care for this vulnerable population (Dossett et al. 2005). Faith-­based communities can also empower PSMH and provide them with a semblance of a normal life, and they may help overcome the stigma of being labeled “mentally ill” by providing PSMH with an alternative source of identity and positive social comparisons, as well as extended network ties. While t­ here is l­ imited research focusing on the role of faith-­based organ­izations in supporting the mentally ill, ­there is a good bit of scholarship

The Current Impasse over M ­ ental Health Care • 9

on their role in providing needed social ser­vices in the community, especially for t­ hose who are homeless (see Adkins, Occhipinti, and Hefferan 2010). In addition, t­ here are many examples of congregations providing dif­fer­ent kinds of m ­ ental health supports to their members.8 Tuntiya (2016) describes an alternative community in Belgium where participants resisted social stigmatization and identified with the more normal social roles associated with engagement in religious activities. More importantly, religious groups are communities, and hence an impor­tant source of social solidarity.

Community Integration as Social Solidarity Emile Durkheim, one of the founding f­ athers of sociology, introduced the term “solidarity” to refer to his concern over the changing nature of social integration within modern society. We prefer the term “solidarity” to integration (which has been overused in analyses of health care) to focus on the need for ties that bind ­people together and that can provide for mutual supports. Solidarity is also central to Christian po­liti­cal ideology, and is a term often evoked by Pope Francis to understand social injustice. “The many situations of in­equality, poverty, and injustice are signs not only of a profound lack of fraternity, but also the absence of a culture of solidarity. New ideologies, characterized by rampant individualism, ego-­centrism and materialist consumerism, weaken social bonds, fueling that ‘throw away’ mentality which leads to contempt for, and the abandonment of, the weakest and t­ hose considered ‘useless.’ ”9 Pope Francis could be speaking to how we have treated PSMH in the de­cades of deinstitutionalization and community-­based care. Durkheim is also noted for his writings on the role of religion, seeing religion as reflecting the ideal world that is fundamental to what constitutes a given society (Durkheim [1912] 1995). That is to say, core values and princi­ples—­often reflected in religious doctrine—­are central to society and the social bonds that hold us together (or drive us apart). Theorist Sonya Hauser (2013, 6) provides a more recent elucidation of Durkheim’s argument that religion and society are one: “We cannot be social without being religious, insofar as we draw our sense of ourselves from common meaning, and we cannot be religious without being social, even if some of the most religious beliefs may be undertaken in isolation. Beliefs and practices alike are drawn from the collective pool.” Durkheim thought that the role of formal religion would decline in modern society, with the new values of equality and fraternity replacing the “old gods,” and that society itself would become the source of ­these new ideals. Examples include secular humanism, or calls for an ethic of social justice. Dur­ ental health with his kheim was also one of the first sociologists to study m investigation of suicide (Durkheim [1897] 1951). He found that what many

10  •  Ties That Enable

consider to be the personal and private act of suicide was a consequence of social solidarity (or its lack), with the degree of group integration being a key ­factor in understanding societal rates of suicide. As noted by Durkheim ([1912] 1995), religion is an impor­tant source not only of integration, but of creative energy, which he referred to as collective effervescence. Imagine the energy generated by the ­bubbles of a glass of champagne, with each b­ ubble an individual and ­these individual b­ ubbles combining (or interacting) with increased energy and ultimately forming a new entity—­that is what Durkheim meant by collective effervescence. It is also what he meant by the idea that the collective cannot be reduced to the individual—we are more than the mere sum of our parts (this is the image the artist has captured in the cover art for this book). It is during times of collective religious rituals when ­people gather together that social beliefs and values are generated and affirmed. Religion is a force for both conformity and social change, as well as the affirmation of higher ideals. As such, religious participation can help individuals develop a sense of agency and enhanced capabilities that can lead to a redefinition of one’s identity from that of a marginalized or stigmatized outsider to one of an enlightened and empowered insider. Religion can also be source of group social empowerment, fostering what Yamane refers to as the “new volunteerism” (2017, 308). That is, religion can promote helping be­hav­iors by setting standards for moral obligation to ­others (Jung 2018), which can then enhance self-­esteem for both the helper and the helped. Religion is also impor­tant to understanding health, both physical and ­mental. The key mechanism linking religious involvement with improved health outcomes is social support. “Religion connects p­ eople in a deep and meaningful way, facilitating friendships and other networks of social support, both material and emotional,” as well as enhancing self-­esteem (Yamane 2017, 309). Social support is nothing more than the concrete experience of solidarity. “Normalization,” “empowerment,” and more recently “recovery” are all ideological terms for developing structures in the community that may help diminish, or at least stabilize, psychiatric symptoms and that can reduce stigma. ­These mediating structures can also provide meaningful social roles and activities, or at least some rehabilitation. They can also enhance, or at least maintain, the individual’s quality of life (McConnell and Perry 2016). Critical to ­these vari­ous forms of community integration for PSMH is the use peer supports, which can empower individuals by providing a more active role in ­mental health care. Peers are an impor­tant source of reciprocal supports and can serve as advocates as well as counselors. However, too often efforts to promote empowerment or recovery focus on medi­cation compliance rather than the development of more reciprocal relationships or mobilizing strategies (McConnell and Perry 2016) that can link individuals to new social networks. While cur­ ental health care emphasizes the brain as the source of ­mental illness, rent m

The Current Impasse over M ­ ental Health Care • 11

­ ental health is a result of the “on-­going pro­cess of interaction between the m ­human brain and its environment[;] it is the social relationships that connect the two” (Schutt 2016, 112). Mediating structures provide the types of social connections that can allow for recovery—­these social structures enable empowerment of individuals. Given the multiple sources of marginalization and stigma faced by PSMH, it is also necessary to develop what are referred to as enclave communities that provide for social inclusion (Lincoln and Adams 2016; Mandiberg 2010) and can ultimately promote social solidarity. Enclave communities are smaller social groups and structures that provide a sense of belonging; they are generally communal in nature, and members share a common identity. In this book we examine the role of a faith-­based organ­ization (the Oaks),10 in providing a sense of place and belonging as well as reinforcing a valued social identity. The Oaks is an example of a spiritual enclave community, and previous research has identified faith communities to be very impor­tant to PSMH (Lincoln and Adams 2016). ­There has been increased attention to the role of faith-­based organ­izations in promoting both community health, as well as social justice (see the March  2019 issue of the American Journal of Public Health). The Oaks is also an impor­tant case, as it was built around a model of peer supports, with the majority of staff having had their own direct experience of recovery. We juxtapose the supports provided by this faith-­based program with the supports provided by the formal structure of community m ­ ental health centers created by the Community M ­ ental Health Centers Act in the 1960s as well as the Community Support Program developed in the 1980s. We explore how diverse community programs provided critical social ties and supports and enhanced the empowerment and capabilities of its participants. In addition to data on community based care collected by the first author during the 1980s to the early 2000s, we build upon an ethnography conducted at the Oaks by the second author (M. Smith 2017). In the following chapter we provide more details about our research. We begin by describing our overall approach to organ­izing materials in this book.

Conceptual Framework and Organ­ization of the Book ­ ental illness is both a personal trou­ble and a public issue, to use terms introM duced by C. Wright Mills (1959). The prob­lem is that we focus on the personal trou­bles and fail to address the structural sources (that is, the social issues) of our individual prob­lems. It is noteworthy that in 1959 Mills stated that “many public issues are described as psychiatric; often it seems in a pathetic attempt to avoid the larger issues and prob­lems of modern society” (10). Still true t­ oday! We blame the prob­lems of gun vio­lence on individual pathology, and ignore the societal and historical context of alienation and anomie. Likewise, the

12  •  Ties That Enable

opioid crisis is seen in terms of individual vulnerability rather than in relation to the societal and historical preference for “a pill for e­ very ill.” So too with our understanding of the c­ auses of suicide and our failure to provide necessary ­mental health supports during the economic crisis caused by the COVID-19 pandemic, even though we know full well that unemployment results in depression and can precipitate suicide. Mills argued that our individual prob­lems must be understood within the context of a given society, within a given historical period, and this framework has been usefully applied to our understanding of health and illness (Hinote and Wasserman 2017). We all share a historical location, w ­ hether we have the same understanding of that history or not. Our individual choices are certainly constrained by what history dictates (such as a focus on deinstitutionalization in the 1960s and managed care in the 1990s). Thus we begin chapter 2 with a focus on where we have been in terms of community-­based care, and describe our research experience collecting data on community-­based care. In chapter 3 we describe the Oaks and give an overview of the findings about the importance of religion in providing participants with a sense of identity and belonging—or a place to call home. We introduce the reader to so­cio­log­i­cal theories about the development and consequences of a stigmatized identity. Building upon both C. Wright Mills (1957) and Talcott Parsons (1960), our conceptual model sees the individual as located within concrete social structures that exist within a given socioeconomic po­liti­cal system (figure 1.1).11 Some readers may find the language of micro (individual), meso (social structures), and macro (the larger social system including a given economy and po­liti­cal system) useful in understanding our argument. The Wholistic Framework for Community Solidarity should be viewed as synergistic rather than linear (Parsons 1960). Energy moves from the individual through the societal to the system level, and from the system through the societal to the individual level in a mutually reinforcing manner. That is to say, individuals are influenced by the social structures around them, but they also have what social scientists refer to as agency—­they can act in ways so as to change ­those structures. Marginalization and stigma operate at all three levels, and are mutually reinforced and reproduced. The Wholistic Framework for Community Solidarity is useful for researchers as well as for ­those involved in community advocacy efforts. Currently, health care providers, researchers, and advocates tend to focus on the individual’s recovery within the system via the empowerment of individuals. At the micro level individuals can experience a degree of empowerment and resiliency in the face of their stigmatized identity. At the meso level, mediating structures and community-­based social supports are necessary for recovery. We use the term “enablement” to highlight the real­ity that systems need to enable individuals who are then empowered to direct energy upward to kindle social change.12

The Current Impasse over M ­ ental Health Care • 13 Micro Level Empowerment Resiliency Social status

Meso Level Enablement Mediating structures Social supports

Macro Level Social inequality Political and economic systems Social justice

FIG. 1.1   Wholistic Framework for Community Solidarity

At the systems level are the social, po­liti­cal, and economic ­factors identified by Yanos, Knight, and Roe (2007) that constrain individual agency: l­ egal restrictions, stigma and discrimination, poverty and in­equality. As a society we need to reduce ­these structural constraints and work ­toward a social system based on equity. In order to achieve meaningful empowerment and recovery, we need to move beyond the individual level to a more complex understanding of how systems can promote justice and the higher ideals we aspire to as a society. At the individual level are PSMH, who are isolated by their ­mental health disorders, and are often minority, generally poor, and face high levels of stigma. Consequently they are marginalized, and in chapters 3 and 4 we focus on the ways in which their identities and capacities ­were enhanced through their experiences in a faith-­based community. The Oaks is an impor­tant source of lay community networks, and in chapter 4 we extend the lit­er­a­ture on social support to provide insights into how individuals living with chronic ­mental health prob­lems are “­doing the best they can” in the face of isolation. As found by McConnell and Perry (2016), persons living with ­mental health prob­lems that are more serious or chronic in nature tend to “churn” through network ties provided by ­family and friends who they identify as critical sources of “perceived” social support, and consequently need forms of new social support. While

14  •  Ties That Enable

individuals perceived ­family to be their primary network ties, in fact it was fellow participants at the Oaks who provided a­ ctual social supports and opportunities for dif­fer­ent types of relationships. As reported by Tuntiya (2016), religious participation offered participants at the Oaks a valued social identity and higher subjective social status. Religion can be seen as a guiding force that can provide a sense of “rightness” in the atypically “wrong” world of PSMH. As such, it is an impor­tant source not only for the mobilization of network ties and normalization in the larger community (that is, solidarity), but also for enhanced self-­esteem and social status. Fundamentally, religious participation provides a valued social identity, which can help overcome both societal and individual stigma. At the meso level we have ­those social structures that link ­people to each other, be they families, workplaces, health care centers, neighborhoods, or larger communities. In chapter 5 we focus on the role of mediating social structures, including club­houses and a faith-­based day program, which can provide critical social supports through programs designed to improve social skills and/or employment opportunities. Involvement with dif­fer­ent types of voluntary groups can also provide opportunities for meaningful social interactions though the activation of new network ties. McConnell and Perry (2016, 121), drawing on the work of Thoits (2011a), refer to this as “network activation.” Formal community supports of necessity share a goal of moving “clients” into the community and reducing their need for ­mental ser­vices. However, this may not be a realistic goal for many PSMH, and the Oaks offered participants a more secure “home” and also provided for enhanced capacities via vari­ous informal activities. Following our ­earlier discussion, formal community-­based care initiatives are based upon an individualistic assumption of in­de­pen­dence, with success being defined as no longer needing the supports of the club­house or case man­ag­er. The Oaks, as a communal or enclave group, was able to promote in­de­ pen­dence within its inclusive community. It is clear that what­ever the outcome, involvement with the vari­ous programs offered by both formal and informal organ­izations gives PSMH not only a place to go, but enhanced opportunities for social interaction with ­others, as well as opportunities for enablement. At the societal level we have a community that is divided by social in­equality, and structures that serve to further isolate or exclude ­those with ­mental health prob­lems. The issues of marginalization and stigmatization experienced by individuals are reflected in dominant ideological beliefs and reduced social status. Stigma is critical to the marginalization of PSMH, and is a major barrier to normalization and recovery. In chapter 6 we move to the macro level (or the socioeconomic and po­liti­cal system) and consider the meaning of overarching structural supports for community integration as well as social justice, focusing on the role of m ­ ental health advocacy and policy making. We consider

The Current Impasse over M ­ ental Health Care • 15

vari­ous federal initiatives to improve ­mental health care and examine recent state-­level ­mental health legislation. This data provides an impor­tant context for policy making as we compare efforts across states to improve m ­ ental health care systems. Are reform efforts directed t­ oward community care, or inpatient care and crisis management, or civil rights and stigma reduction, or ­toward the criminal justice system? We then move to a more detailed analy­sis of state-­level ­mental health reform—­contrasting North Carolina’s focus on privatization and bureaucratic oversight with Wisconsin’s emphasis on recovery and consumer involvement. In the final chapter we discuss in greater detail the interrelationships among the micro, meso, and macro levels with the goal to develop ideas for how structures can enable individuals, and how individuals can exercise their agency to change social structures. Critical is the meso level, especially the role of communities. We draw on the theory of community justice developed by Galarneau (2016, 1) and her argument that health care is a community good, and that “social relationships at the community level are essential to health care.” Communities are the primary source of social solidarity, and given the diversity of communities, solutions to the prob­lems faced by PSMH must start with community-­level initiatives. How can social structures be “enabled” so as to empower individuals and enhance capacities? What kinds of social structures are needed to meet the lofty goals of community integration and the ideals of meaningful recovery? How can social systems promote equity and social justice? We call into question the goals of “normalization” often associated with recovery within the context of a society marked by structural inequalities and vio­lence (Kelly 2005; Scheid 2016). Dif­fer­ent communities have dif­fer­ent degrees and levels of in­equality; consequently, efforts to promote health justice must begin at the community level (Galarneau 2016). While PSMH need to develop resilience in order to deal with the daily experience of marginalization and stigmatization, recovery requires supportive social structures that enable individuals to live fulfilling, rewarding lives. However, re­sis­tance strategies are necessary to change levels of social stigma and sources of marginalization (Harkness, Kroska, and Pescosolido 2016; Marcussen, Gallagher, and Ritter 2019). Re­sis­tance strategies challenge social ste­reo­types and can empower both individuals and groups to work ­toward social justice.13 In this book we make the issues of community and social justice central, and seek to theoretically and empirically elucidate why creating “ties that enable” is central to solving our m ­ ental health crisis. We need to move beyond our focus on individual recovery to more complex understandings of systems, and the meaning of community integration and care. This requires that we move from ­ ental illness and recova medical model to a social model that sees the roots of m ery 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

16  •  Ties That Enable

recover. The stigma and marginalization of t­ hose stigmatized by m ­ ental health prob­lems are rooted in socioeconomic inequalities (Kelly 2005; Link and Phelan 2001), and not only in the public stigma of ­mental illness. Accordingly, the social structures that surround individuals must be reor­ga­nized so as to provide for what Paul Farmer (2005) has termed “preferential justice”—­where ­those who are marginalized are more, not less, deserving of care.

2

Looking Back Reflections on the Real­ity of Community-­Based ­Mental Health Care I (Teresa Scheid) have been deeply involved in community m ­ ental health research since the start of my doctoral work in 1982, as part of a National Institute of ­Mental Health (NIMH) grant to study deinstitutionalization, and have experienced four de­cades of community-­based care. As a researcher I spent time in state hospitals undergoing deinstitutionalization, traveled to dozens of community ­mental health care centers to determine what kinds of care individuals w ­ ere receiving in the community, and interviewed m ­ ental health providers about their work with PSMH. I was also a NIMH postdoctoral fellow at the University of Wisconsin–­Madison, and worked with psychiatrists and social workers as well as sociologists seeking to improve community-­based ­mental health care. I have continued to work with community groups, both as researcher and as advocate, and this firsthand experience has given me a unique perspective on community-­based m ­ ental health care—­both its successes and its failures. In this chapter I use this experience to provide readers with a firsthand historical account of the cycles of m ­ ental health care briefly reviewed in the first chapter. At the end of the chapter Megan Smith describes her more recent experience of the m ­ ental health system. It has become common practice for qualitative researchers to complete a reflective memo that identifies their assumptions (and potential biases) as they 17

18  •  Ties That Enable

embark upon their fieldwork. I think quantitative researchers should do the same ­thing, and as a mixed-­methods researcher I believe it is impor­tant to describe the ways in which our data informs our theories and how our theories inform our data collection. That is, my research (as well as Megan’s) is neither inductive nor deductive; it is abductive (Timmermans and Tavory 2012), with a continual blending of theory and data and direct experience of the real­ ity of community-­based care. As I take the reader along with me through my journey into the realities of community-­based care, I locate my experiences within the larger societal and historical context surrounding community ­mental health care.

A ­Family’s Experience of Severe M ­ ental Illness To begin on a personal note, my f­ ather’s youn­gest ­brother lived and died with a diagnosis of schizo­phre­nia, and my f­ amily provided him with a home when I was in high school. My ­uncle Bob was the youn­gest of five boys—­all successful athletes in high school. Bob was handsome, and I thought he looked like Bobby Kennedy; he finished college, got married, and had two ­children before the onset of serious m ­ ental health prob­lems. Bob was a Vietnam vet, and from my current knowledge of psychiatric diagnosis, he suffered from the symptoms of PTSD, alcohol-­induced psychosis, and manic depression with no clear-­cut psychiatric diagnosis.1 He was on numerous medi­cations over the years, and enjoyed talking to me not only about the side effects he endured, but how much the medi­cations interfered with his ability to do anything “useful.” He was variously prescribed Haldol, Mellaril, and Prolixin as well as numerous medi­ cations for the many side effects ­these drugs caused. As for so many suffering from severe ­mental health prob­lems, a set diagnosis and medi­cations ­were not the answer, and community supports ­were needed (Neugeboren 1999). When Bob lost his job, his wife, and his c­ hildren, his life began a downward spiral, and he was periodically homeless. While supportive and able to provide for my ­uncle financially, my ­family did not provide him with the sense of community and belonging he needed. I remember one incident where my parents literally called the police as Bob attempted to join them on the golf course at their country club. Yes, his be­hav­ior was bizarre, and I understood that their reaction was based on fear, but he was pleading for inclusion and belonging. More importantly, the ­family rejected a ­woman with whom he had established a supportive close relationship. She was accused of seeking only access to his “money” and the income provided by a ­family trust fund set up for my ­uncle. That may have been true, but she was very close to Bob, made him feel loved, and gave him a home when no one e­ lse would. While ­under the financial guardianship of one of his b­ rothers, Bob also had a ­mental health payee who doled out a ­limited amount of money each month for his expenses. This went on for

Looking Back • 19

a few years, during which Bob was sometimes in a hospital, sometimes homeless, and sometimes ­doing okay. The erratic nature of serious and chronic ­mental illness is a major obstacle to successful community integration, which requires a high degree of stability. My ­uncle became more and more isolated and ultimately died of a heart attack in his early fifties. We now know that individuals with chronic and serious m ­ ental health prob­lems have lower life expectancies of ten to fifteen years below the average we all expect. Bob’s life could have been better and his early death prevented with a more inclusive (as opposed to exclusive) community environment—­something between the informal (and inadequate) care of his f­ amily and the formal control of an inpatient ward or m ­ ental health payee. The experiences my ­Uncle Bob had living with his serious ­mental health prob­lems are confirmed by Sue Estroff (1981) in her ethnography of what she refers to as psychiatric clients. Her book is based upon her dissertation completed at the University of Wisconsin, and describes the experiences of both staff and patients in an outpatient treatment program. The title of the book is Making It Crazy, and Estroff describes what it was like for clients to live with their symptoms and be­hav­iors. As my f­ amily found, staff felt that their clients ­ ill of their families, while clients felt powerless, havoften abused the good w ing l­ittle control over their lives and few ties to the world outside the clinic. Estroff describes how patients felt about their medi­cations, echoing what my ­Uncle Bob had said: he was reluctant to acknowledge his “need for drugs,” he feared them, they made him feel powerless, and he did not like the side effects. Estroff took Prolixin for six weeks (very controversial then in the days before we ­were all medicated to some degree), and reported that she was shaking, forgetful, uncomfortable, could not sit still, and felt “flat” as if t­ here was a “glass barrier between me and o­ thers” (1981, 105). My u­ ncle was not so eloquent as Estroff, but this is what he also experienced and shared with me, as one of the few ­people who would listen to his complaints about the medi­cations he was told to take. As reported by Estroff (1981), de­pen­dency on a drug and the visibility of side effects such as tardive dyskinesia actually increase the stigma of ­ ncle Bob certainly experienced what Estroff (1981, 104) ­mental illness. My U described as “­others’ fear, disdain, and rejection b­ ecause of the stigmata that are now physical.” It is sad that he experienced this from his ­family as well as from the larger community, but as we w ­ ill see in chapter 4, this is typical.

The Ascendency of Community M ­ ental Health Care While community-­based care officially began with President Kennedy’s 1963 Community ­Mental Health Centers Act, the preference for community-­ based care of PSMH must be placed within the larger context of deinstitutionalization.2 Begun in a period of economic growth and po­liti­cal liberalism,

20  •  Ties That Enable

deinstitutionalization reflected a preference for community as opposed to institutional care for ­those with chronic m ­ ental health prob­lems. The Community ­Mental Health Centers Act ordered each state to designate catchment areas to serve between 75,000 and 200,000 PSMH, and community m ­ ental health centers (CMHCs) ­were generally or­ga­nized along county lines. Funding for CMHCs went directly from the federal government via the NIMH to local control of the CMHC (Levine 1981), bypassing the state, which controlled financing for state ­mental hospitals. This led to direct conflict between state and local authorities, with states continuing to fund state ­mental hospitals even as the number of patients being treated in ­these hospitals decreased dramatically. State legislatures expected local communities to fund outpatient care; however, funding never matched the demand. Instead state ­mental hospitals continued to exist, with a large portion of state ­mental health dollars being spent on state hospitals that continued to serve ­those patients who could not survive on their own in the community. Some state hospitals diversified and began to provide a wider range of outpatient residential ser­vices. Dowdall (1996) describes the diverse array of outpatient ser­vices offered by the Buffalo State ­Mental Hospital following deinstitutionalization, and Gudeman (1988) details the evolution of the Boston Psychopathic Hospital into the Mas­sa­chu­setts ­Mental Health Center. Both case studies show how some state hospitals provided comprehensive treatment for PSMH, including outpatient care, day programs, skills training, and partial hospitalization. However, in most communities underfunded and understaffed CMHCs strug­gled to meet the needs of the thousands of patients who ­were discharged from the state hospitals into the community. CMHCs also had a large role to fill—­they ­were expected to develop the adaptive capacities of the client in order to allow for community integration as well as to develop community attitudes of tolerance, re­spect, and helpfulness (Bockoven 1972). ­These goals required CMHCs to assume social work rather than psychiatric functions (Adler 1982). Furthermore, CMHCs also had to coordinate the vari­ous agencies that serve PSMH—­including ­those that provided ­mental and physical health care, housing assistance, income maintenance, crisis care, and skills training. Given the broad ideological mission of CMHCs, it should come as no surprise that ­there was an abundance of lit­er­a­ ture and research that documented the failure of DE. As nicely summarized by Mechanic and Rochefort (1990, 306), DE was a “disjointed, non-­linear pro­ cess.” However, it was not the fault of DE per se, but the failure of community-­ based care. It is true that DE was not an official policy, and so no agency or group was responsible for DE. Nor can CMHCs or ­mental health profession­ ere not financially, ideologically, or structurals be blamed; CMHCs simply w ally equipped to deal with the multiple medical and social prob­lems experienced by PSMH. While DE did result in the reduction of p­ eople being served in state

Looking Back • 21

­ ental hospitals, prob­lems with “overlapping issues of territoriality, resource m supply, technical capacity, and conflicting orga­nizational styles and objectives” (Mechanic and Rochefort 1990, 323) led to the fragmentation of community ser­vices. At that time, m ­ ental health professionals w ­ ere trained to provide therapy to the “worried well”—­individuals experiencing life’s normal stressors—­not individuals whose illnesses ­were “severe, per­sis­tent, and dysfunctional” (Rochefort 1989, 2). Rather than therapy, many PSMH need a ­great deal of social supports in order to live in the community. One m ­ ental health provider Scheid (2004) interviewed described having to continually go to a client’s apartment to help him turn on the stove; such work with PSMH was viewed by many professionals as demeaning and unrewarding. Lang (1981) reported that clinicians found the “chronically mentally ill” to be among the most undesirable cases. More fundamentally, Lang (1981) found that professionals had l­ittle training or preparation to implement effective community m ­ ental health goals, and that providers had to develop their own strategies to deal with PSMH. Fi­nally, most communities simply did not (and still do not) accept PSMH, fighting against the establishment of needed community supports such as group homes or opportunities for community work. Instead, PSMH often ended up homeless, or in single-­occupancy rooms, board and care homes, nursing homes, or jail. The meta­phors describing ­those days ­were of “­wholesale dumping” or “falling through the cracks” or “a shuffle to despair.” A focus of a g­ reat deal of research at that time was on homelessness, as PSMH ­were disproportionately represented among the homeless, although the prob­lem had more to do with the lack of affordable housing and income supports (see Snow et al. 1986). Unfortunately, homelessness remains a salient social prob­lem, and researchers continue to focus on innovative solutions to housing PSMH (Schutt and Goldfinger 2011).

The Failure of Community ­Mental Health Care While the pro­cess of DE began in the 1950s, research on the consequences of DE would take de­cades to emerge. I was fortunate to be a senior-­level research assistant on a statewide study of DE u­ nder an NIMH grant funded to V ­ irginia Aldige Hiday at North Carolina State University in 1982. The objectives of the research ­were fairly straightforward: What happened to patients following their civil (as opposed to criminal) commitment hearings? What ­factors “predict” commitment? What kinds of community care or ser­vices do clients receive or utilize? ­There was a focus on dangerousness, since then (and now) t­ here was a widespread public perception that ­those with serious ­mental illness ­were “dangerous,” and involuntary commitment required evidence of dangerousness to self or ­others. Th ­ ere was also a new type of commitment, outpatient

22  •  Ties That Enable

commitment (now referred to as assisted outpatient treatment), and this was a key focus of the research proj­ect as well as of my own dissertation, completed in 1986. The study included three state m ­ ental hospitals serving the eastern three-­ fourths of North Carolina (excluding the hospital in the western region), and several larger county psychiatric facilities. Dr. Hiday and I divided up the research sites, and we traveled e­ very week with one of four master’s-­level research assistants to each of the three state hospitals and one or two of the county facilities. We began with a visit to the local court­house, and collected data on all individuals undergoing an involuntary civil commitment hearing and documented evidence of dangerousness as well as any other ­factor that could conceivably influence the commitment decision. In all, we collected court data on over 1,200 individuals. We then traveled to the hospital with the names of t­ hose individuals facing involuntary commitment hearings, and attempted to get informed consent to collect data from them six months ­after their commitment hearing. I had never been to a state m ­ ental hospital, and had only an academic impression from Goffman’s Asylums and of course vari­ous movie images—­most vividly of The Snake Pit, which paints a dark picture of the social control functions of a ­mental hospital. While portrayals of Nurse Ratched in One Flew over the Cuckoo’s Nest show the ways in which be­hav­ior is indeed controlled, the ward depicted in the movie is fairly benign and shows evidence of the therapeutic functions of ­these “total” institutions. Dr. Hiday generally went to Dorothea Dix Hospital in Raleigh, which ­housed a forensic unit, while I traveled to John Umstead and Cherry hospitals. All of the hospitals looked pleasant enough on the outside, with lots of trees and long gravel driveways, but the interiors ­were very dif­fer­ent. Dix was the most modern, with few locked wards, but it suffered from high rates of vio­lence, as it also ­housed a forensic unit. Dix was unique in that men and ­women could travel across a central hallway to each other’s wards, lending to some degree of freedom, but also to concerns about patient safety. Umpstead (as we called it) came close to darker media images of asylums, as it was a confusing place with long corridors, poor lighting, paint peeling from the dingy gray walls, and locked wards with glass-­enclosed nursing stations. Cherry was the most rural of the hospitals, and also the most bureaucratic in terms of rules governing access to patients. While the interior was cheery (no pun intended), with brightly painted walls, individuals ­were much less responsive to us than in the other state hospitals. We never knew if this was due to medi­cations or to rural distrust of “­those p­ eople from Raleigh.” The county facilities w ­ ere all very dif­ fer­ent from one another in terms of types of patients, staff, and physical location. Central to the idea of community-­based care is that e­ very community is very dif­fer­ent, and no one model of care works for e­ very community.

Looking Back • 23

­A fter a good bit of training and a few trial runs, we soon settled into a research routine. Early in the day we would check out the state vehicle allotted to us—­moaning again at the older, tired car with no radio and much less air conditioning, and happy with the very occasional newer vehicle (both w ­ ere white with prominent state license plate tags, so no speeding no ­matter how late we w ­ ere for the court hearing). Mornings w ­ ere spent at the court­house (easy to find at the center of town), and a­ fter getting lost a few times we went to the psychiatric hospital. We tried to arrive just a­ fter lunchtime so we could talk to patients while they ­were in one room for recreation and before they fell asleep. However, we often could not find patients, and one of the first papers from the research proj­ect detailed our efforts to obtain informed consent (Scheid-­Cook, Hiday, and Wotten 1987). In all the hospitals, the ­women’s wards ­were far noisier than the male wards, with high-­pitched yelling and animated conservation. The men ­were quieter, perhaps due to more liberal use of tranquilizers. I would travel mostly with Keith, a tall albino master’s student who raised more than an eyebrow or two with his long white hair and thick glasses. We found that our identification as somewhat “hippie type” gradu­ate students as opposed to the professional demeanor we needed for the court­house was a much better persona for talking to the patients, and needed l­ ittle more than the removal of a jacket and letting our hair down (literally and figuratively). Since we w ­ ere not allowed to give individuals cigarettes or cash, we traveled with a big bag of Lance snack-­ packs of cookies and crackers as a thank-­you gift. Surprisingly, t­ hese ­were greatly appreciated.3 We soon developed vari­ous routines for eliciting consent, which consisted in first establishing some rapport with an individual, listening to his/ her story, and then asking him/her to help us to identify what t­ hings could be improved to help out o­ thers living with m ­ ental health prob­lems and in institutions. The primary reason for nonconsent was not being able to talk to a patient. As we document in that early paper, many patients ­were not on their assigned unit and could not be located (this was a surprise, as it was quite common), or they ­were asleep and we could not rouse them. In all, we obtained consent from close to 80 ­percent (79.5 ­percent) of the individuals we talked to, with only 9.2 ­percent refusing consent. The six-­month follow-up consisted of examining patient rec­ords at each hospital, which sometimes arrived on carts with files six inches thick. We then traveled to the individual’s local county to visit the community ­mental health center, and then to the county courtroom to determine if that individual had been arrested since their commitment hearing. We also attempted to reach individuals for a telephone interview (interviewing more than 300 individuals) and interviewed the f­ amily of most of t­ hose individuals we could not contact individually. In addition, Dr. Hiday and I had been trained at Washington

24  •  Ties That Enable

University to administer the Diagnostic Interview Schedule (DIS), which would help determine an individual’s psychiatric diagnosis. We attempted to interview one hundred individuals ordered to outpatient commitment (OPC), and succeeded in interviewing sixty-­eight such individuals. ­These interviews ­were very time-­consuming, taking three to five hours each, as in addition to the DIS, we added numerous questions (far too many in hindsight) on social supports and stress as well as community care. Most interviews w ­ ere conducted at the CMHC where the individual had been ordered to OPC, which afforded me with the opportunity to talk to clinicians and staff about OPC. However, some interviews ­were conducted at the individual’s home—­often a poor, rural shack—so we obtained a good sense of the real­ity of life for ­those living in the community. Dr. Hiday would refer to many of our research participants as “poor pitifuls” as a result of their social marginalization and lack of community supports. The social workers I now work with use the term “tissue papers” to underscore the fragility t­ hose who remain marginalized in our communities. Our research provided evidence for the failure of community care, with patients revolving in and out of the hospital as many as eleven times from the initial commitment to the six-­month follow-up. We experienced firsthand the administrative and system difficulties in providing for community care. Communication channels among the courts, the hospitals, and the CMHC ­were at best incomplete, at worst non­ex­is­tent. Referrals seemed to depend on informal connections between individuals who worked together across orga­nizational bound­aries rather than on formal procedures. The CMHC generally had no knowledge of patients being released to their care, even in the cases of an outpatient commitment order. In evaluating outpatient commitment, we found that one of the key variables in its success was “the extent of CMHC dedication to making OPC work” (Hiday and Scheid-­Cook 1987, 230). However, we found that ­whether or not they ­were successful, staff and providers at CMHCs ­were caring and concerned. They ­were not opposed to providing care for PSMH; they simply had very l­imited means with which to deal with the monumental prob­lems faced by PSMH. Community care requires that basic needs are met in order for the ideal of integration into the community to be realized, and integration requires a nonstigmatized, accepting environment. More fundamentally, reimbursement for even minimal levels of community care was inadequate. Funding for community care is a reflection of federal policy and was restricted a­ fter the Reagan era block granting of the Alcohol, Drug Abuse, and ­Mental Health funds as well as Social Ser­vices funding (the 1980 Omnibus Reconciliation Act). ­These block grants ­limited federal funds, and states and local communities w ­ ere held responsible for funding CMHCs, which resulted in wide variability in support from one community to another. In addition, changes in federal policies affecting Department of Housing and Urban Development and welfare funding also had

Looking Back • 25

detrimental effects on PSMH. Few would disagree that funding was (and still is) inadequate, leading to wide gaps in ser­vices. CMHCs simply had neither the resources nor the capacity to provide for even the most basic needs of PSMH, much less to achieve the lofty ideals of community integration.

Coordinating Community Care As the de facto institutional entity in charge of ­mental health care, the NIMH developed a number of initiatives to address the many deficiencies of community-­based care. The first was the provision of training grants and ser­ vices research initiatives geared to training ­mental health professionals and increasing the research basis to understand how best to provide community care. A good number of both postdoctoral and predoctoral programs ­were funded across the country in the 1980s and 1990s. The NIMH also developed and oversaw the Community Support Program (CSP) to focus on outpatient ser­vices for ­those with chronic ­mental illness. Distinct from the CMHC, the CSP was to provide case management, support for activities of daily living, psychosocial rehabilitation, residential ser­vices, and recreational activities, and also engage in client advocacy (Tessler and Goldman 1982). Case management involves the coordination of the many ser­vices and supports (income, housing, medical care, medi­cation) needed by individuals with a chronic ­mental illness. Case man­ag­ers also provide a ­great deal of both emotional and tangible social support (Dill 2001). Many CMHCs worked to meet the standards of CSP certification, with the development of case management a central component, and attention shifted from individual outcomes to issues related to the integration of care. I had direct experience with the result of ­these two initiatives when I served in a NIMH postdoctoral training program that was collecting data on not just patients (as had the e­ arlier grant on which I worked), but also on m ­ ental health providers, orga­nizational structures, and systems-­level initiatives in Wisconsin. In 1984 Wisconsin had passed a law requiring ­every county to establish a CSP, and understanding how CSPs ­were or­ga­nized to provide care and improve client outcomes was a central focus of my postdoctoral work. I w ­ ill expand on this in chapter 5, when we look at the vari­ous ways organ­izations have provided formal supports for PSMH. In addition to efforts by the NIMH, the Robert Wood Johnson Foundation established funding for nationwide demonstration proj­ects u­ nder the umbrella of a “Program on Chronic M ­ ental Illness.” A call for proposals was sent to sixty cities, and fifty-­six responded with “56 dif­fer­ent ways to treat p­ eople with ­mental illness” (conversation with Martin Cohen, deputy director of the Program on Chronic ­Mental Illness). Ultimately, nine cities ­were selected to serve as RWJ Program on Chronic ­Mental Illness demonstration sites, and each site received $2.5 million to be used over five years, a $1 million low-­interest loan

26  •  Ties That Enable

for housing development, and 125 housing vouchers (Shore and Cohen 1990). This funding was for the following: Provide housing to ensure that when individuals ­were released from the hospital they ­were connected to aftercare and had someplace to live. 2 Centralize clinical, fiscal, and administrative authority to merge separate entitlements so that funds followed the client. 3 Provide for continuity of care by making one person (a case man­ag­er or primary therapist) responsible for each client. A second means of providing continuity of care would be the development of client tracking systems. 4 Develop a wide range of ser­vices such as mobile outreach, emergency ser­vices, client-­operated programs, club­houses, and drop-in centers. 1

I accepted a position as an assistant professor at UNC–­Charlotte in 1990. Charlotte had a CSP, called the Continuing Care Division (CCD) to highlight its focus on coordinating care for ­those with serious, per­sis­tent ­mental illnesses (at that time referred to as SPMI). The CCD was also funded as a demonstration site ­under the RWJ Program on Chronic ­Mental Illness. I had a wonderful laboratory to work in, and I quickly established contact with the CCD. I met the director of the CCD (with whom I established a close working relationship) and the deputy director of the RWJ program on Chronic Illness at an informal luncheon, and offered my ser­vices as a researcher to help them evaluate their programs to provide for integrated treatment to PSMH. The Charlotte demonstration proj­ect had been excluded from existing evaluations of the RWJ initiative b­ ecause of some unique features of their delivery system. Specifically, authority for the grant had moved from a hospital system to the county, and the CCD still contracted out ser­vices from the hospital. Lacking more formal evaluations, the director of the CCD and other relevant decision makers in the county and hospital joint authority ­were more than happy to let me collect data to provide them with some local evaluation results. I spent at least one day per week over three years at the CCD, attending their club­house on a weekly basis, as well as staff meetings, and eventually became a valued colleague—­ working on grants and papers and seeking to improve community-­based care along with providers (Scheid and Anderson 1995; Scheid and Mayer 1995). At that time, ­there had been few studies of the work done in CMHCs, and I was interested in the treatment ideologies of ­mental health providers in CMHCs. The CCD was interested in understanding not only the sources of burnout for their providers, but in ways to alleviate burnout. As is common with what we now refer to as community-­based participatory research (CBPR), I merged my

Looking Back • 27

interests into the data the CCD wanted collected, and began a ten-­year period of data collection on the work experiences of m ­ ental health providers and efforts to improve community integration. The RWJ Program on Chronic M ­ ental Illness was rigorously evaluated at both the system/provider and client level, with improvements in ser­vices at the system level expected to translate into better client outcomes. While system integration, access to housing, and other supports did improve, t­ here ­were not significant improvements in client outcomes, which was speculated to be due to the lack (or appropriate use) of standardized clinical interventions (Cuddeback and Morrissey 2017). At the CCD we tracked client-­level improvements due to case management ser­vices (analyzing data from 1988 to 1992), and found steady improvement over the course of the RWJ grant period, as well as a decrease in the number of clients needing maintenance treatment (Scheid and Mayer 1995). In addition to improved client outcomes, referrals to the state hospital had dropped by 40 ­percent, and the use of emergency ser­vices dropped by 32 ­percent. At the same time, the CCD experienced an impressive expansion of ser­vices, improved relations with other agencies providing care to PSMH, and an improved reputation at both the national and local level. Ultimately, the CCD would be a leader in the movement to managed care (see below), and would serve as a model for other communities. Another key lesson learned from the CCD was the need to involve staff and providers in the development and implementation of program philosophy (Scheid and Mayer 1995). I sought NIMH funding to expand on this finding as well as to further understanding of treatment ideologies. When my efforts to secure such funding w ­ ere not successful I began exploring opportunities for a NIMH postdoctoral fellowship to give me the right kinds of skills to successfully compete for grants. I happened to meet Professor James Greenley (a leading m ­ ental health researcher) at annual sociology meetings, and he encouraged me to apply to the NIMH postdoctoral program at the University of Wisconsin at Madison, which I did, and I was accepted. UW-­Madison’s is one of the more elite sociology departments, and is home to many leading m ­ ental health researchers (including Leonard Stein, David Mechanic, Ronald Diamond, and Mary Anne Test) who developed the Program for Assertive Community Treatment (PACT) model of community care. James Greenley was a good mentor for me, as he was one of a relatively small group of ­mental health researchers whose scholarship focused on organ­izations and systems of care. I continued to conduct my interviews with m ­ ental health care providers in the public sector as well as private ­mental health providers in Charlotte and extended my research to ­mental health providers in Wisconsin. My early interest in treatment ideology expanded as my data revealed the major ways that managed care was changing ­mental health care and ultimately delivery systems.

28  •  Ties That Enable

The Commodification of Care Managed care is any system that seeks to control access to ser­vices or seeks to regulate the type and amount of care received. Historically, a major divide between ­mental health care providers was w ­ hether they worked in the private or the public sector. The distinction was based upon ­whether care was reimbursed by private insurance (generally employer-­based) or by public monies (Medicare or Medicaid). While managed care has the potential to improve care, the primary focus is to contain costs, resulting in reductions to ser­vices that are deemed costly, intensive, and long-­term—­unfortunately, precisely the type of ser­vices needed by t­ hose with serious m ­ ental illnesses (Mechanic 1994). State ­mental health authorities embraced managed care in order to help control the costs of public sector m ­ ental health (Essok and Goldman 1995). Consequently, with managed care, the distinction between private and public is no longer as meaningful, as many public sector agencies have been privatized with managed care. Insurance-­based care is also subject to managed care oversight and restrictions on care. Therefore, the most valid distinction is ­whether the client has a short-­term acute ­mental health prob­lem that can be resolved with medi­cation or short-­term therapy or ­whether the client has a serious m ­ ental illness and requires long-­term care and case management. ­ ental health prob­lems, states have contracted out In terms of more serious m ­mental health care to private managed care firms who manage care, or e­ lse to in­de­pen­dent m ­ ental health care organ­izations that provide care. The social supports needed for long-­term community stability are not authorized u­ nder managed care arrangements, which do not meet the standard of medical necessity or clinical efficacy. One fact that accounts for the failure of the RWJ Program on Chronic ­Mental Illness is that clients with chronic and serious ­mental disabilities do in fact need long-­term, continuous care and that diverse ser­vices and ser­vice sectors need to be coordinated. However, client-­level outcomes are not likely to show fundamental improvements on an aggregate level, though system-­level improvements can result in a better quality of life. Unfortunately, it is hard to define, much less mea­sure, improved quality of life or recovery, as both domains assess subjective and objective conditions of life (Keith and Keith 2013). Funding for comprehensive ­mental health care is not market driven; rather, it results from government policies that affect not only access to health care, but income, housing, and welfare. Even before the advent of managed care, ­ ental illness was inadequately funded, the long-­term care required by chronic m and we have experienced further reductions with the 2007 recession and funding cutbacks at the state and local levels. The Trump administration has also worked to reduce funding and protections for PSMH via reductions to Med­ ental health and substance abuse programs through the icaid and funding to m Substance Abuse and M ­ ental Health Ser­vices Administration (SAMHSA).

Looking Back • 29

An impor­tant obstacle to evaluating managed ­mental health care is the difficulty in evaluating treatment effectiveness; t­ here is ­little consensus about the sources of ­mental illness, or on appropriate treatments, especially for PSMH (Mechanic 1999). Not only is it difficult to define the nature of the prob­lem, but dif­fer­ent types of treatment work with dif­fer­ent types of clients. In terms of chronic and severe m ­ ental illness, ­there may not be noticeable signs of improvement, even within excellent programs (Mechanic 1999); it is also far more difficult to determine standards for medical necessity (Manderscheid et al. 2000). Moreover, client confidentiality limits collection of, and access to, data. Yet managed care does rely upon the assessment of client outcomes, and has led to the development of a scientifically (as opposed to professionally) based system of treatment and practice guidelines. Managed care emphasizes cost containment, per­for­mance assessment, and mea­sur­able outcomes, and subjects the treatment actions of health care providers to increased scrutiny and orga­nizational control. As described by Dill (2001), with managed care the role of the ­mental health case man­ag­er changed from linking clients to ser­vices to keeping down the costs of care (that is, not providing ser­vices). Dobransky (2014) documents similar dilemmas in his research on ­mental health care providers. Managed care uses a variety of means to control the work of caregivers in order to reduce the costs of care and limits the autonomy of health care providers. The primary ways in which managed care controls costs are by limiting access to ser­vices and the utilization of more costly ser­vices while encouraging the use of less costly ser­vices. In order to determine the cost-­effectiveness of a given treatment, managed care systems must assess empirically verifiable “success,” or outcomes. M ­ ental health treatment must be “medically necessary”; increasingly, managed care companies or insurers ­will only reimburse ser­vices that have been scientifically validated as efficacious. Mechanic and McAlpine (1999) argue that managed care has produced a democ­ratization of care—­where every­one gets a similar level of ser­vices, and ­those with greater ser­vice needs (that is, chronic ­mental illness) do not get the more extensive ser­vices they need. Furthermore, criteria of medical necessity and mea­sur­able outcomes have resulted in a reliance upon short-­term therapy, group sessions, and psychiatric medi­cations. I collected data from the CCD as they moved to a managed care model and sought to manage care for the entire state of North Carolina (1996—2002). At this time, the CCD provided ser­vices to over 1,500 clients with severe, chronic ­mental illnesses. Administrators began planning for a movement to managed care in 1996 and hired a managed care director to develop and implement a strategy to manage care. During the four-­year period of orga­nizational transition, I interviewed directors and administrators responsible for implementing managed care and attended staff meetings and development meetings with groups of providers. In the spring of 1998 I distributed a questionnaire to all

30  •  Ties That Enable

direct care providers (N = 90) in order to collect data on the organ­ization prior to managed care. The questionnaire was extensive and took close to an hour to complete and included open-­ended as well as fixed choice questions. The questionnaire was replicated in 2000 in order to evaluate the impact of managed care.4 The majority of respondents w ­ ere case man­ag­ers, and they w ­ ere representative of the larger population of providers at the CCD. I also compared the data I collected at the CCD to the larger dataset of 240 providers collected by Dr. Greenley’s team in Wisconsin. In terms of their orientation to community-­ based care, the CCD was remarkably similar to a sample of nineteen m ­ ental health outpatient programs in Wisconsin (Scheid and Greenley 1997). I found that the CCD was unique in its proactive movement t­ oward managed care, and in its attempt to preserve the ideology of community-­based care as well as professional control of ­mental health care ser­vices (Scheid 2003). The CCD was also unique in that it was the first public sector agency to obtain accreditation from the National Committee for Quality Assurance. The data I collected was impor­tant ­because it tells us about the impact of managed care in an organ­ization that worked hard to preserve the ideals of community-­based care. The providers I interviewed and who completed questionnaires in 1998 expressed concern that managed care would limit access to ser­vices, and that the “over concern with the cost of care might prohibit clients with severe, per­ sis­tent ­mental illnesses from getting the ser­vices they needed” (provider with a master’s in social work). Providers know their clients well, and realized that severe ­mental illnesses require long-­term care and intensive social supports. It was unclear in 1998 how managed care would meet the needs of their clients; as one nurse administer lamented in a personal interview with me, “When we first started hearing about managed care I wondered—­how is this g­ oing to work with a person who ­can’t hold a job, who needs ongoing ser­vices, but they ­aren’t in the hospital? Who is ­going to pay for that?” ­Mental health providers still won­der how we ­will fund the needed care and supports for PSMH (Myers 2015). On a more optimistic note, some providers in 1998 felt that managed care had the potential to integrate delivery systems, increase accountability, and widen access to underserved populations. However, two years l­ ater the only benefits of managed care ­were felt to be cost containment and increased accountability. Only one respondent felt that “ser­vices seem to be more streamlined and a ­little better coordinated,” and another felt that ser­vices had increased (both respondents w ­ ere administrators). The majority of respondents did not feel that managed care provided any benefits, or shared the more cynical critique of managed care as focused on managing money, not care. One nurse argued that “managed care is a plan created to pretend to provide quality care and be accountable. Anyone who has ever had to navigate a managed care system for their own care knows it has nothing to do with care. It has to

Looking Back • 31

do with making money, laying on multiple layers of staff who monitor success (or prevent them), and destroying any bond you have with your consumers.” Providers at CARE ­were quite out­spoken in their identification of the prob­ lems with managed care. Most prevalent ­were concerns over the quality of the care provided and the limitations placed upon long-­term ser­vices. Providers reported that patients ­were often discharged without adequate treatment or did not get the ser­vices they needed. Another nurse stated that managed care had resulted in “shortened length of stay in the hospital for the seriously mentally ill, resulting in clients being ill and sent into the community before they are stabilized. The community resources are not in place for our client population, housing and other supports . . . ​consequently clients get sick, they never stabilize, they have to return to the hospital—­it’s a revolving door.” The revolving door was associated with the early days of deinstitutionalization, when community supports for ­those with chronic and severe illnesses w ­ ere non­ex­is­tent. In describing how their work had changed since the advent of managed care (Scheid 2004), providers at the CCD universally complained about excessive paperwork and difficulties with the management information system (a computer system that contains client data). Consequently, they w ­ ere less able to provide direct client care. Providers reported a twofold increase in time spent documenting care, and felt that efficiency was hindered by having all ser­vices needing to be certified by the review panel rather than the treatment team. One comment from a nurse I interviewed demonstrates the impact managed care has had on her ability to provide care to her clients: “The paperwork has expanded at least fourfold, and is taking additional time from patient care. ­There is not time to build a relationship with a patient or his f­ amily, and trust is lost, the frustration level in providing care b­ ecause of cumbersome preapproval procedures and denials of needed ser­vices has increased to a level where I ­will be glad to leave nursing.” Providers reported that they “treat the computer, not the consumer,” and the “­human connection feels more automated, its assembly like maintenance.” Every­ one felt that they spent less time with clients, and far more time meeting bureau­ ere frustrated that treatment decisions w ­ ere now cratic demands. Providers w being made on the basis of cost rather than clinical need and that volume was a higher priority than quality of care. Almost all of the providers gave feedback on the open-­ended questions about the negative effect of cost containment strategies on the quality of care, and the “devastating effect of shortened lengths of stay for chronically ill clients.” More alarming, close to half of the providers who completed the questionnaire cited concerns with the quality of care ­under managed care. The emphasis on cost was felt to directly interfere with client care, and cli­ ere getting sick and sicker. In response to a question about the prob­lems ents w with managed care, one male case man­ag­er said that “fiscal issues are more impor­ tant than client-­related ones, ­there is a lack of information to ground-­level

32  •  Ties That Enable

clinicians regarding changes, ­there is staff burnout—­look at the number of new hires in case management over the past year. Case man­ag­ers and other professionals seem to have to fight for ser­vices; our hard jobs are getting harder.” Care work had become a commodity, with providers finding they “spend less time with consumers, [and] more time documenting d­ oing less for the consumers.” Providers expressed a sense of dismay, as the gains that had been made during the years of community ­mental health ­were being lost. As one nurse lamented: Almost every­thing I used to do in this job was impor­tant. I had a ­great relationship with consumers assigned to my caseload, I have worked front line for almost twenty years. I have been recognized by individuals and organ­ izations for my advocacy on behalf of mentally ill consumers. With the changes in Medicaid and the introduction of this Case Management system, all of this has changed. I got into this profession b­ ecause I like consumers and their families. I’m good at what I do and I make a real difference in folks’ lives. With the death of a real community support system, I worry what is to become of our consumers. Why ­can’t ­people learn from what works? Now we are g­ oing backwards. We are doomed to repeat our ­mistakes.

This dismay was also echoed in the professional and academic lit­er­a­tures on ­ ental health. As Shore and Biegel (1996, 77) argued, managed care provides m a “controversial” challenge to “traditional definitions of m ­ ental illness and treatment goals.” More recently, Dobransky (2014) examined how two community ­mental health organ­izations attempted to meet demands for bureaucratic accountability while also providing for community-­based care and client empowerment and recovery. Dobransky (2014) provides a very nuanced analy­ sis of institutional fragmentation, where competing demands pull providers and clients in dif­fer­ent directions. He found that violations of the bureaucratic rules could result in a loss of funding, whereas ­there ­were few mechanisms to support client empowerment or community rationales for integrated care. The hard jobs of ­mental health care providers had become even harder, with reduced funding and further cuts to ser­vices and increased demands for accountability. Many ­mental health advocacy groups have been critical of managed ­mental health care (for example, the National Alliance on Mental Illness and the Bazelon Center for ­Mental Health Law), and have been working to protect safeguards for quality care, a topic we w ­ ill return to in chapter 6.

The Dilemmas of Recovery Perhaps not coincidentally, along with managed care came a focus on client-­ based recovery. While difficult to define, much less mea­sure, t­here are two

Looking Back • 33

distinct views of recovery (Watson, Adams, and Jackson 2016). First is the biomedical view that emphasizes the reduction of psychiatric symptoms and a “return” to a normal life, that is, fulfilling normative expectations and roles. Generally this is accomplished by the “patient” taking their prescribed medi­ cation. The biomedical view of recovery is generally held by ­mental health providers who focus on diagnosis and adherence to a given medi­cation regime as a necessary first step to recovery. Providers do have a relatively high degree of power over their clients, and nowhere is this power more apparent than in the ability to “coerce” compliance with psychiatric medi­cation. A second view of recovery is that promoted by the consumer/survivor movement, which emphasizes self-­determination, agency, and improved quality of life (which is not necessarily resuming normal social roles). The issue of empowerment is problematic, and the dual meanings of recovery help us understand the conflict between providers and their clients over the meaning of empowerment in the face orga­nizational constraints that link ser­vice provision to compliance with treatment directives. While m ­ ental health care providers w ­ ere facing the orga­ nizational consequences of managed care, PSMH w ­ ere facing the daily real­ity of living with ­these two contradictory meanings of recovery. ­ ental As described by Dobransky (2014) in his detailed analy­sis of two m health clinics, providers responded to the dilemmas posed by empowerment and recovery by ceremonial adherence to empowerment practices, while still tying resources to clients’ be­hav­iors. Providers a­ dopted a strategy of “allocating choice” (91) by seeing some clients as more appropriate for autonomy, and by limiting the circumstances in which clients could make their own decisions about care. Th ­ ese kinds of decisions w ­ ere linked to the informal, as opposed to formal, labels of clients—­that is, was a client severely or not severely mentally ill? Was the client “directable” or “disruptive”? In making t­ hese decisions, providers are making judgments about ­whether a given PSMH is a “good” person, or “worthy” of empowerment. Myers (2015, 13), in her more recent ethnography of recovery, argues that moral agency, or the “ability to be recognized as a good person,” is the “overlooked driver of recovery.” She details the path to recovery, with step one being “Take Your Medi­cations.” Medi­cation adherence is an evidence-­based “best practice” and is considered the primary means to insight and rationality. However, most psychiatric medi­cations have notable side effects, as Estroff describes so well in her much ­earlier ethnography (1981) when she took Prolixin in order to understand the client’s perspective. Estroff (1981) and Myers (2015) concur in linking side effects to further stigma. For providers, noncompliance is a major prob­lem, while for PSMH, side effects are a major prob­lem. It is no won­der that so many consumers refer to themselves as “survivors” of the ­mental health system. The second author of this book has experienced the dilemma of recovery in her own treatment for depression as a young adult, and

34  •  Ties That Enable

we turn to her reflections to understand how medi­cation can shape recovery. While Megan was not facing the many prob­lems of serious m ­ ental illness, her account can give the reader some insight into the dilemmas of recovery, and it also points to the critical role played by community supports. I (Megan Smith) have a PhD in sociology with a focus on m ­ ental health, and I study social communities and the role they play in improving health outcomes. While I knew on an intellectual level that social supports w ­ ere critical, instead of strengthening my own community to support my ­mental health, I reluctantly took the pills that the psychiatrists prescribed year ­a fter year. I believed the meds w ­ ere the answer and “knew” better than to not take the meds even though the side effects prevented me from engaging in normal activities, and made me gain massive amounts of weight. I was also concerned about disappointing ­those who loved me, who looked for some “fix” and “solution” to my prob­lems a­ fter years of strug­gle. Medi­cations offered hope and a cure—­a way to alleviate the pain when it seemed all e­ lse had failed. Despite the many side effects I experienced, I continued to take the meds. ­Every eve­ning for almost sixteen years, I was reminded of my diagnosis. Even if I had a good day of productive work and enjoyable visits with friends, eating healthy food, exercising, and feeling good about myself, t­ here was that blue and white capsule reminding me that at any moment my mood could change and I would be depressed. I dreaded that carefully planned-­out hour. Take too early and become drowsy, take too late and you w ­ ill miss your win­dow and be up for hours, in the darkness, thinking and worrying that maybe you ­were losing your mind. Take without food, it may not work properly, take with alcohol, it’s a roulette. Th ­ ere w ­ ere also t­ hose rare occasions when I twisted the top off the prescription ­bottle cap and it was empty a­ fter the pharmacy closed. Then I felt real panic, fear, and dread of psychological withdrawal, with physical consequences to arrive in the dead of night when every­one ­else was sleeping. Nausea and shooting pains would prevent me not only from sleeping, but from moving around to calm my restless thoughts. Torture is the only word to describe t­ hose nights. My real insight came when a journalist from another country affirmed on a motivation level what I had known on an intellectual level. I began to reach out to p­ eople and told them I needed help, and to my g­ reat delight they showed up. I had to work at helping myself and went places when invited even though all I “wanted” to do was lie on the sofa and watch true crime dramas. I attended all sorts of classes and activities, working hard to connect to my community and make new friends. I also changed my diet and exercise routine and began the slow pro­cess of weaning myself off my medi­cations, beginning with my sleeping medi­cation and in subsequent months carefully lowering the dosage of my other medi­cations. One day, by accident, I missed a dose of the medicines altogether, and I de­cided to just stop taking them. I talked to my friend,

Looking Back • 35

a psychiatric nurse, who asked questions and told me what to expect. It was just as bad as I had thought it would be. The withdrawals ­were horrendous. The sleep was minimal, and for several days I felt like I was high on something, but no drugs ­were in my system. My body could not stop moving. I felt like it was not me talking. Then came the slump where I literally went from the sofa to the bed. At first, I thought I had a kidney stone, then thought maybe it was just a ­really bad cold. Every­thing hurt. I missed work. I missed out on a lot. While the worst was over in about three weeks, some withdrawal symptoms lingered much longer. I wondered, Is it ­really the drugs? Then I got mad and wondered what kind of person would prescribe medicine that had ­these kind of physical and addictive effects. Did anyone know the long-­term consequences? If it made me this sick for this long to get off of it, what ­else w ­ ere they d­ oing to my body? Then fi­nally came the week where my head felt clear and I felt strong; I was fi­nally able to fall asleep and slept for hours. When I awoke, I felt dif­f er­ent. Life was simply brighter and clearer, and before you think I was getting manic, my thought pro­cess remained clear and functioning at a normal speed. I felt happier, more confident, and energized. I wondered how I had r­ eally made it through sixteen years on ­these drugs. However, I still fear the judgment of t­ hose who view medi­cation as the primary means to m ­ ental health, and I am still afraid to tell some ­people that I am not taking meds. I would never say that psychiatric medi­cations are not necessary, and they are an impor­tant first step for so many, especially ­those facing depression and the risk of suicide. It may be that medi­cations w ­ ill always be necessary for many PSMH. But medi­cations are not the sole means to ­mental health; you need to do the therapeutic work. Central to the arguments we make in this book is that you have to find, build, and cultivate social supports and relationships. While medi­cations may function as a ban­dage for a sprained ankle (Neugeboren 1999), you need to eventually get off the couch and walk. However, you need someplace to walk to, and we turn in the next chapters to a consideration of the need for places for PSMH to walk to.

3

Being a “Right Person” Social Ac­cep­tance in a Faith-­Based Program In the wake of the vari­ous failures of community care, in this chapter we focus our attention on one small organ­ization seeking to provide community-­based social supports. We introduce the reader to the Oaks,1 a faith-­based day program developed to meet the needs of PSMH in the Atlanta metropolitan area. The program was developed in 1996 to address homeless PSMH, a widespread social prob­lem that persists to this day. When the Oaks was founded, the mission was to “sweep the streets” and find a place for homeless PSMH to go during the day (at night many ­were sleeping in shelters). The Oaks has continued to provide a positive environment for over twenty years. Coauthor Megan Smith conducted an ethnographic case study in order to understand the social worlds of PSMH within the context of a faith-­based program. In her research she explored the role of the Oaks in aiding participants to reach ­toward their maximum potential, the social relationships among participants, and their experiences participating in religious practices. We begin this chapter by providing the social and historical context for the Oaks, then turn to a more detailed description of the research, and end with a consideration of the vari­ ous ways in which the Oaks, as a faith-­based organ­ization, provided a valued social identity to participants.

36

Being a “Right Person” • 37

Historical Background Georgia turned a critical eye on the conditions of the chronically mentally ill in the community and found innovative ways to utilize infrastructures that had been developed for the 1996 Summer Olympics, which w ­ ere held in Atlanta. In terms of historical framing, Deutsch (1948) provides a detailed account of Georgia’s state ­mental hospital in Milledgeville that describes Georgia’s checkered past of caring for the mentally ill. At the time, the m ­ ental hospital h ­ oused 9,000 patients and was the largest of its kind in the world. Deutsch (1948, 93) judged it as the worst of 190 U.S. state ­mental hospitals in operation at the time, describing it as “backwards,” with buildings being referred to as “old firetraps.” Additionally, Jim Crow practices separated African Americans into dif­fer­ent wards, placing them in bug-­and vermin-­infested surroundings with inadequate food. ­Needless to say, conditions at Milledgeville w ­ ere deplorable. More recently, in Georgia, as in other states, treatment for m ­ ental illness has moved to the criminal justice system. The number of inmates being treated for ­mental illness increased 73 ­percent between 1999 and 2006 (Simmons 2006). Georgia agreed to radically overhaul the state’s ­mental health system as a condition detailed in the settlement of a lawsuit filed by the federal government in 2010 (Judd 2017). Discharged from psychiatric facilities due to hospital closures and a decrease in available beds, former patients ­were moved to extended-­ stay motels. Even worse options implemented by the state included directions to homeless shelters and “Greyhound therapy,” or one-­way bus tickets out of town. As a consequence of the lack of community care, Judd (2017) documents high rates of death and suicide. However, Georgia does provide us with an example of how a small enclave community can provide a home for PSMH. The Oaks was developed in 1996 to provide homeless PSMH a daytime place go during the Summer Olympics, and continues to provide health and wellness programs as well as peer supports. The program was originally h ­ oused in a church, but the parish was forced to relocate in the late 1960s due to interstate highway construction. The relocated parish was in a neighborhood that was home to mostly African Americans due to the then common practice of “redlining.” As was typical in most major urban cities, most African Americans ­were refused credit on a discriminatory basis ­because they ­were deemed a poor financial risk, and became concentrated by ­limited housing in certain neighborhoods. Shortly following the relocation of the church, “personal care ­ ere established in the same neighborhood to h ­ ouse the community-­ homes” w dwelling mentally ill who had recently been deinstitutionalized. At the same time, “white flight” began, which negatively affected the membership of the church. ­Until the 1970s, the congregation of the church was mainly white middle-­class and working-­class individuals. By the mid-1970s, the church had

38  •  Ties That Enable

only thirty-­five members and one quarter-­time clergyperson. In 1982, the bishop of Atlanta informed the parish that the diocese could no longer afford to supply clergy even on Sunday and that he would be forced to close down the parish within a month. One of the part-­time vicars requested a six-­month reprieve to see if the ­dying parish could be revived. In the words of the canon missioner, who l­ ater became the vicar of the parish, the few families left prayed “that God would send them the p­ eople that no one ­else wanted.” Within a ­matter of weeks ­these prayers ­were answered as PSMH from the nearby personal care homes accepted invitations by the vicar to attend Wednesday and Sunday ser­vices. The parish provided a safe space for new attendees to talk about their lived experiences, share coffee, and eat lunch. Almost forty years ­later, the average Sunday morning attendance is approximately seventy-­five ­people. It is a typical parish in that its members gather on Wednesday eve­nings for healing ser­vices and a community supper and on Sunday mornings for Holy Eucharist. However, unlike in most parishes, the majority of parishioners live with chronic ­mental illness. How did this enclave community emerge and develop? In late 1995, a state employee who was serving in the Office of Consumer Relations in Georgia’s Division of ­Mental Health and was also a member of the church learned from the food man­ag­er at an Atlanta psychiatric hospital that the institution was stocking up on extra food for when the 1996 Summer Olympics came to town. The state’s plan, according to the hospital’s food man­ ag­er, was to sweep the streets of all the homeless and mentally ill and ­house them in the two metro state psychiatric institutions during the Olympics so that they would not be an eyesore while Atlanta was in the world spotlight. As someone in recovery from m ­ ental illness himself, the state employee was deeply troubled by this dehumanizing plan that perpetuated stigma and hopelessness. He proposed an alternative plan to his supervisor based on his experience of a program in Hamilton, Ontario, called the Friendship Center. The Friendship Center was the vision of a married ­couple, one of whom was a psychiatrist working in the public m ­ ental health system whose son was in recovery from schizo­ phre­nia. The Friendship Center provided support and a social place for the chronically mentally ill to spend time away from their group homes, and this type of day program became the template for the state health worker’s proposed center in Atlanta. In par­tic­u­lar, the state worker a­ dopted the open membership policy, art therapy program, and an informal structure that provided a flexible space for PSMH to engage in activities and social interaction. ­Mental health professionals in Atlanta w ­ ere enthusiastic about having another option for their unemployed clients who had few places to go during the day, and they worked with several area churches to host similar programs during the Olympics. Five other churches joined the program, using volunteers from their respective churches. While all of the centers closed following the Olympics, the priest at one of the churches that had sponsored a Friendship

Being a “Right Person” • 39

Center noticed that a cutback in state day programs for individuals with m ­ ental illness was resulting in some of his parish members becoming isolated in their group homes. The church supported reopening the Friendship Center at this one location. This center, which we refer to as the Oaks, now serves approximately sixty to seventy individuals on Tuesdays and Thursdays between 9 a.m. and 2 p.m. The Oaks provides transportation to the program, a hot breakfast and lunch, and programming between meals. Individuals are invited to work on art, reading, yoga, and other activities that support recovery. The Oaks has a board of directors and has attained 501c status as a nonprofit, which is crucial for funding resources. The vicar manages the daily operations and oversees all staff, including program directors, the janitor, and the gardening staff, for a total of eigh­teen paid personnel. Additionally, she oversees all volunteers, who range from participants to community members. The Oaks is unique in that as a faith-­based program many of its activities are or­ga­nized around religious activities. Participants gather in a church, which also holds ser­vices on Wednesday nights and Sunday mornings. Participants who attend the day program comprise the majority of the church congregation, and serve as greeters, acolytes, and readers of the liturgy. The day program at the Oaks provides a variety of ser­vices in addition to the formal programs held Tuesdays and Thursdays. This combination of a familiar population with expanded opportunities for social fellowship creates an enclave community that both welcomes and enriches the lives of participants. At the same time, many of the activities and opportunities afforded to participants at the Oaks are not very dif­fer­ent from ­those offered in secular club­houses and day programs throughout the country. Program attendees receive hot meals and have access to a community clothes closet. The primary recreational activity is art therapy. Basic physical health ser­vices also are provided and include foot care, assistance with general hygiene, weight monitoring, and blood pressure checks. Some program participants work for pay in the on-­site community garden, which is supervised by a staff member, or help volunteer program staff in the kitchen. In addition to Tuesday and Thursday programs, many participants also attend church ser­vices held at the church on Sunday mornings and participate in religious ser­vices or other activities held on other weeknights throughout the month. The mission of the Oaks has been “to provide a community of support and empowerment for adults marginalized by poverty and ­mental illness” (staff interview), and this is achieved through programming efforts aimed at promoting “loitering with intent,” a term coined by the former vicar. The concept of loitering with intent means that staff members sit down and initiate conversations with participants about topics ranging from the weather to life in per­ ere peers, having experienced sonal care homes. Many of t­ hese staff members w ­mental health prob­lems and achieved a level of recovery. As a result of both

40  •  Ties That Enable

formal programs and informal interactions, the Oaks provides participants with community solidarity and empowerment within and outside the center. It is an impor­tant example of how a community can provide PSMH a place to call home, and the second author undertook an ethnographic case study of the Oaks for her dissertation. Ethnographic research involves participation and immersion in a given social world in order to understand the uniqueness of participants’ lives.

An Ethnography of the Oaks I (Megan Smith) have always had an interest in understanding the lives of PSMH. Early in my gradu­ate ­career, I read Sue Estroff’s Making It Crazy (1981) and became intrigued by Estroff’s findings about the social relationships PSMH have with each other and how few relationships they had with ­family or friends. The collection of anecdotal stories I had gathered indicated that PSMH w ­ ere capable of having relationships, often with o­ thers who had, at the very least, temperaments that ­were similar to the symptoms of ­mental disorders. I wanted to know more about the types of relationships and supports experienced by PSMH. A ­ fter completing my master’s thesis, I entered the PhD program in sociology at Emory University and formed relationships with faculty who studied m ­ ental health and social networks. I was referred to Dr. Molly Perkins, who had a research relationship with the Oaks and served as a con­sul­tant. She was willing to mentor me with my own research at the Oaks. I asked leadership at the Oaks permission to conduct my research, and they welcomed me for over three years. From the day I arrived at the Oaks, I disclosed that I was a student researcher, and I informed participants repeatedly of my status. On most days, I wore shorts, colored T-­shirts, and r­ unning shoes and carried a small backpack. During my research, t­ here was a pastor in training named Megan, ­ ere confused about which Megan was clergy and which and many participants w was the researcher, but we w ­ ere both accepted as confidantes. I also identify as Christian, and my knowledge of the rituals and the words to songs and my familiarity with the stories discussed during Bible studies boosted my credibility with participants. Most had strong biblical foundations, and they clearly clung to the hope of Jesus’s healing and of an afterlife where pain and suffering would no longer exist. I believe they appreciated that I recognized and accepted ­these concepts. The primary goal of my research was to understand the social worlds of the chronically mentally ill within the context of a faith-­based program and the social institution that underlies ­those experiences. I conducted a mixed methods ethnography in order to explore the role of the Oaks in (1) aiding participants to reach t­ oward their maximum potential, (2) exploring the dyadic social relationships among participants, and (3) understanding participants’ experiences in

Being a “Right Person” • 41

participating in religious practices within the context of the Oaks’ community. The data we pre­sent in this book are based on forty-­one months of fieldwork during 2012 to 2105 that includes participant observation, informal and in-­depth interviews with seven program staff and twenty-­seven participants, and a review of fa­cil­i­ty rec­ords. I conducted a total of thirty-­eight field visits, which ranged in length from one and a half to five hours, but typically lasted two and a half to three hours. The Oaks serves a racially diverse group living with chronic m ­ ental illness in the community. Administrative data collected by the Oaks shows that about 60 ­percent are African American and 5 ­percent are members other minority groups; 60 ­percent are male. The majority of participants have been diagnosed with schizo­phre­nia, many with paranoid schizo­phre­nia. Other common diagnoses include bipolar disorder and depression. Anyone over the age of eigh­teen is eligible to participate in the program, and about 40 ­percent w ­ ere over the age of fifty. The program has no formal membership pro­cess. Participants learn about the program through social ser­vices agencies, group home providers and residents, and word of mouth. More than 30 ­percent of the program participants had been homeless at one point in their lives, and most participants in the program lived at or near the federal poverty level. The Oaks is supported financially by the denomination’s Atlanta diocese as well as by other churches in the city who contribute to the operating costs of the center. Individual donations and small grants fill in the gaps. Informal interviews w ­ ere unstructured and carried out in the course of conducting observations. A range of participants was selected for formal interviews, representing the sociodemographic characteristics of participants and their varying levels of social involvement in structured and unstructured programming. T ­ able 3.1 pre­sents the characteristics of the twenty-­seven participants who ­were interviewed. In comparison to the overall population, the ­ ere more likely to be male (82 ­percent) and Black participants I interviewed w (71 ­percent), and represented all age groups. The vast majority (85 ­percent) had never been married, and 44 ­percent had not completed high school, although ­ ere in the good to fair range. evaluations of their physical and ­mental health w However, t­ hese statistics do not tell us much about the lived experience of participants, so let me introduce you to two participants, Ruth and Theo, who are representative of the PSMH who attended the Oaks. Ruth is a twenty-­seven-­year-­old African American ­woman who has been attending the Oaks for a c­ ouple of years. She is friendly and out­going, and many of the participants are drawn to her engaging personality. She laughs a lot. Ruth has schizoaffective disorder and claims to maybe have a diagnosis of bipolar disorder too. Ruth often frames situations in a positive light, creating an identity ­ ental as a “fun” person, and claims to never have been negatively affected by m health issues. She stated that the diagnosis did not affect her employment or

42  •  Ties That Enable

­Table 3.1

Demographic Characteristics of Participants at the Oaks* N

Percentage

Gender  Male  Female

22 5

82 18

Race   African American  White  Other

19 6 2

71 22 7

Marital Status   Never married  Married  Divorced  Widowed

23 1 2 1

85 4 7 4

Education   Less than high school   High school   Some college   College degree

12 8 5 2

44 30 19 7

Self-­R ated Physical Health  Excellent  Good  Fair  Poor

5 10 9 3

19 37 30 11

­ ental Health Self-­R ated M  Excellent  Good  Fair  Poor

3 11 10 3

11 41 37 11

Age (years) range from 27 to 66 with a mean of 49 * N = 27

educational opportunities or relationships with f­ amily and friends. She spoke fondly of close relationships with f­ amily and especially of her best friend, her “­ride or die bitch,” with whom she hangs out all the time. Ruth spends most of her time away from the Oaks with non–­mentally ill individuals. Ruth currently works as a gardener at the Oaks. She successfully completed the trial period of working consistently for two months without incident as a volunteer and then started working for pay. She has worked for almost two years in this capacity. She said that her m ­ ental illness diagnosis never r­ eally affected her ability to work before her attendance at the Oaks; it was more a ­matter of lack of opportunities available to her. Ruth is dif­fer­ent than most other participants at the

Being a “Right Person” • 43

Oaks in that she has multiple religious identities and nonreligious identities. “I was born a Muslim, but I’ve been raised around Muslims and I’ve been kind of capturing the Chris­tian­ity type and I’ve been showed like, Buddhism and stuff and so . . . ​I want to say that I’m Muslim but I feel like I d­ on’t have a religion.” Ruth believes that the labels placed on beliefs and religious identities are problematic b­ ecause of their tendencies to separate p­ eople. The goal of faith, she argues, is to be obedient and to love a Higher Power, a belief she finds that other participants at the Oaks also share. Theo is a fifty-­eight-­year-­old African American male who never married, is a high school gradu­ate, and is currently unemployed. Theo has been diagnosed with paranoid schizo­phre­nia and has been hospitalized “too many times to count; I’d say about ten to fifteen.” He got swept up in the crack epidemic in the late 1980s in New York City. About twenty-­five years ago he moved from New York City to Atlanta with his s­ ister, who is his Supplemental Security Income (SSI) payee, b­ ecause he “was d­ oing drugs and sitting and hanging out around the wrong ­people.” As his payee, his ­sister pays his rent and incidentals and occasionally buys Theo snacks and soft drinks. While Theo had held multiple menial jobs, he typically lost them when he was hospitalized, although he told me he was a hard worker and rarely took time off for vacation. Theo currently lives in a personal care home with four other participants. He said that he was unhappy with his previous group home ­because it lacked flexibility and choice. He mentioned his dis­plea­sure to one of the Oaks staff members who connected him with a new group home, and he subsequently moved. He commented that he did not like sitting at home all day and watching TV with the other ­house­mates, so he spends his time roaming the neighborhood, sometimes visiting nearby businesses and asking store employees for w ­ ater. At the center, Theo often sits in the smoking section. He typically has cigarettes and sells them for 25 cents apiece, making him popu­lar among participants. During programming, he plays bingo and wins prizes. He gives all his prizes to Sarah, a friendly and well-­liked African American ­woman who he claims as a particularly good friend. Theo has four siblings, all of whom he considers close, although ­there are varying degrees in frequency of contact. He indicated closeness to other ­family members, although he speaks to them only “once in a while” or “rarely.” Theo also said he was close to three other participants, although he was not as close to them as to his f­ amily. Like other participants, Theo perceives the quality of the majority of his relationships very positively. In-­depth interviews ranged from thirty to seventy minutes, with an average time of forty-­five minutes, and w ­ ere digitally recorded and transcribed verbatim. Interview guides had a semi-­structured format consisting of an outline of issues relevant to the study aims. This format allowed me to adapt the sequencing and wording of the questions to fit each unique interview situation and to incorporate follow-up probes to obtain additional information or details

44  •  Ties That Enable

as needed. Staff interview guides addressed ser­vices and policies, the quality of staff participation, and the social relationships among participants. They also included probes about ­mental health training and employment experiences. Participant interview guides included questions regarding m ­ ental health status and history, such as age of diagnosis and prior hospitalizations, and about their experiences at and perceptions of the Oaks. Information collected from program rec­ords included an overall profile of the Oaks in a report by the center, which included census information describing the surrounding community and demographics of program participants, including information on previous homelessness. The Oaks also provided me with a copy of their mission statement, program vision, meeting agendas, and strategic plan, which included photo­graphs (head shots) of participants, volunteers, and staff. In analyzing the data a thematic analy­sis approach was employed, which is a common method used to identify and analyze recurrent themes and patterns in qualitative data. Using a deductive and inductive approach, coding involved both theory-­driven and data-­driven methods; this method is now referred to as “abduction” (Timmermans and Tavory 2012). In the first stage of analy­sis, I created a code­book of a priori codes based on the study aims as well as concepts associated with the mediating structures and capabilities approaches. As analy­ sis progressed, emergent themes ­were added to the code­book. All coding was performed by me (Smith); codes and emerging themes ­were refined and confirmed through regular meetings with Dr. Perkins and other members of the research team. A key question of my research involved the role of religion in the lives of PSMH. The semi-­structured interview guide asked participants questions such as “What meaning does religion have for you?,” “How impor­ tant is religion in your life?,” and “Does religion play a role in the relationships you have with other participants at the Oaks?” We turn next to a consideration of t­ hese findings.

Meaning and Connection through Faith The Oaks as a faith-­based community clearly provided participants with a valued social identity—­with religion being both a precursor to their involvement at the Oaks, but also providing a means of subjective social status. Many participants reported that their religious beliefs served as a guiding force through the ­trials of their lives. While most participants referred to a Christian belief system, a small number w ­ ere Muslin. Randy, a forty-­four-­year-­old high school gradu­ate with schizo­phre­nia who resides with his parents and ­sister, who also has a ­mental illness, said about religion, “It taught me how to be a right person.” This idea of living “right” was also mentioned by Scott, who said, “I believe in King Jesus and God the ­Father that they ­will take care of my wants and my needs but I just need to keep d­ oing the right t­ hing and keep g­ oing the right

Being a “Right Person” • 45

way, even though I slip and fall sometimes—­I’m not perfect. But ­they’re always ­ ere to help pick me up and help me out so I believe religion is a very impor­ h tant t­ hing in my life.” For several of the participants, religious values are even more impor­tant ­because they have been in jail or have been homeless and have resorted to crime to get by. The notion of being a “right” person derives from a moral or ethical code instilled through participants’ involvement with religion since they w ­ ere ­children. As Peter said about his childhood, “When I was four years old [my ­father] became ­really involved in the church and they kind of forced religion on me. We was forced to go to church on Sunday mornings and eve­nings and Tuesday prayers . . . ​[my ­father was] making us go to Bible studies and other church activities.” Another variation of this “right” living is living righ­teously. Cindy spoke about righ­teousness: “If you [have] the righ­teousness of God, you ­ ese excerpts indicate that participants have ­ain’t got nothing to worry about.” Th moral and ethical codes by which they live and that also provide for a valued social identity. Many participants talked about their foundational religious beliefs, indicating a sense of belonging to a community of like-­minded p­ eople at the Oaks. For example, Bernard said about his solid foundation in Christ, “I mean if I ­didn’t believe in Jesus, I ­wouldn’t believe in anything. . . . ​[My belief] gives me a rock to stand on.” Patrick, an African American man with schizo­phre­nia who works in the garden, said, “Sustaining ­things, sustaining a foundation and priorities and keeping values all in the same balance so you ­won’t fall ­here or fall ­there. . . . ​You just gotta be careful where you step and how you step and religion kind of gives me a forefront on where I need to step.” Marian, the gardening director, also referred to this sense of belonging and said that it mattered particularly for participants when the symptoms of their ­mental illnesses w ­ ere negatively affecting their lives. “Religion is a kind of base . . . ​and having a sense of God’s being ­there when ­things are ­really just horrible and nothing ­else is ­there and nobody ­else is ­there, you know, which prob­ably makes [religion] more impor­tant than it is for me, who’s had a rather privileged life and h ­ adn’t needed that kind of base so much.” Religion has a central position for many participants, as they use it to bond to other participants and staff members. Donald stated that religion “is the main ­thing [in my life] . . . ​each normal pro­cessing group that you experience, a good relationship or relationships and find ones that are best for you—­pick out ones that are best for you and [get to know] them and grow better. I think mine is the church . . . ​church is pretty much where it is, you know?” Religious beliefs and practices served as a common bond; participants of all ages recognize that their religious beliefs bond them to other like believers. ­These bonds are out of both expectation and preference. For example, Scott, a thirty-­year-­ ­ other always told old African American man with schizo­phre­nia, said that his m

46  •  Ties That Enable

him that “birds of a feather flock together,” indicating that as a Christian, he should interact and hang out with other Christians. Bernard, a sixty-­five-­year-­ old white male, said, “We have [our religious beliefs] in common.” At the same time, t­ here was recognition that some participants come from differing religions and re­spect the fact that not every­one at the center is Christian. Cindy, a forty-­five-­year-­old African American who has experienced stigma related to both her ­mental illness and her HIV status, values the sense of belonging she has found at the Oaks among both Christians and non-­Christians: “[Other participants] got their own beliefs. I d­ on’t want nobody coming h ­ ere scared to come h ­ ere. I re­spect them like I re­spect me.” ­There was a ­great deal of re­spect for freedom of religious beliefs held by the Muslim constituents of the program. Tiger, a thirty-­three-­year-­old African American male who became a Muslim while incarcerated for a drug trafficking felony, indicated that he respected t­ hose with differing belief systems and recognized that “­people r­ eally need their faith,” what­ever faith that may be. “I try to stay away so ­people could keep their faith and what they believe in. And I try my best not to . . . ​carry myself in a way where . . . ​­there be disbelief in what [Christians at the Oaks] believe in . . . ​­people r­ eally need their faith.” As reported by Ruth (described above), she not only re­spects other participants’ beliefs, but admires their religious ceremonies, ser­vices that she also attends on a regular basis: “I love the way they practice their ceremonies and stuff and it’s so pretty when they sing.” Some participants talked about how they had religiously oriented conversations with other participants. Elise, a twenty-­eight-­year-­old white w ­ oman with borderline personality disorder who lives in­de­pen­dently, said that she had conversations with other participants about religion. ­These conversations ­were not l­ imited to simply discussing religious topics, but expanded to the participation in religious rituals, which was an additional ele­ment of t­ hese common bonds. “I actually talk about [religion with other participants] sometimes. Yes, I do. It’s not about the talking that’s power­ful. It’s more of the action [i.e., participation in rituals] that is taken through that.” Staff also discussed the bonding that occurred through participation in religious rituals and activities. Lilly, the health and wellness instructor, indicated that in some instances believing in God is not sufficient comfort; participation in rituals is the “helpful” ­thing: “I think that the ­actual ser­vices, though, ­there’s like a communion that happens between ­people and knowing what comes next and being a part of that . . . ​I think that is helpful.” Not only is participation helpful, but it is evident that collective participation holds a special meaning for participants. An example of this is singing during religious ser­vices. Arnold, a white male who holds outside employment as a part-­time grocery store clerk, loved “singing the songs”: “I can see some of the spirit of the o­ thers or some of their feelings. Th ­ ey’re not h ­ ere to not sing and argue with other

Being a “Right Person” • 47

p­ eople to say, ‘Hey, you know, this is a good [experience].’ ” Chelsea, the vicar and acting executive director, said that religious participation was a “common ­thing” that both bonded and occupied participants: “It’s a commonality that they can talk about and share even if they ­don’t ­really talk about it and it gives them something to do. It’s an activity. It’s a shared activity. So it’s being close with somebody ­else. Proximity builds familiarity. And so it gives them something to do.” Religion was an impor­tant source of solidarity that was both fostered and maintained through engagement in religious rituals. Chris, the art director, describes how “every­body participates in the rituals of the church. You know the chalice ­bearers and the . . . ​acolytes. You know, ­doing ­those duties . . . ​they have to work together and learn together about what needs to be done and why it’s being done. So that prob­ably creates a dif­fer­ent kind of bond b­ ecause t­hey’re d­ oing ­those kinds of t­ hings together.” Marian, the gardening director, had the observation that “worship connects ­people to each other. And ­people are saying, ‘Oh why ­don’t you come be an [acolyte]’ to each other. You know, ‘I’m d­ oing this, I can show you how.’ I think it does foster relationships.” Another staff member echoed that religion facilitated relationships with staff members: “­There’s still that ­ e’re all together and every­body’s singing or sort of shared responsibility when w every­body’s saying prayer or . . . ​you know, it equalizes.” This equalizing of social relationships was not just between participants but was also evident between participants and staff. When asked if religion connected him to vari­ous staff members, Donald indicated that he viewed many of the staff as ­family based on their shared religious beliefs and values. “Yes, ­they’re Christian and that’s an awesome ­thing. [We are] part of the same ­family . . . ​Jesus Christ’s ­family.” While Donald expressed a preference for “hanging out with Christians,” most participants ­were respectful of alternative religious beliefs, as noted above. Religious values provided a sense of “rightness” or of being good. We can see from the quotes that religion created a unique space for staff and participants, and a space they could share on equal footing. Participation in religious activities and rituals also helped to take individuals outside of themselves, creating a sense of collective effervescence as defined by Durkheim, transforming the everyday mundane world into a spiritual experience. Rituals and ceremonies are critical to religion, as they create and reinforce a sense of a shared community, a place called home that takes PSMH outside of their marginalized social statuses to one that is valued. We turn next to consideration of the importance of a valued social identity.

Social Identity and Being a “Right Person” More than other types of illness, m ­ ental illness fundamentally affects one’s sense of identity—­the question of “Who am I?” (Estroff 1989; Laing 1960).

48  •  Ties That Enable

Attributions of irrational be­hav­ior (i.e., having a ­mental health prob­lem) involve how we think, mood disorders target how we feel, and many believe that t­ hese thoughts and feelings are not “normal.” The identity of a mentally ill person is highly stigmatized, and can exacerbate the stress of living with a ­mental health prob­lem. Possessing a stigmatized identity is in itself a barrier to resuming a “normal” life or recovery. As we learned from participants at the Oaks, religious involvement can offset this stigmatized identity, providing a sense of being a “right” person, or a socially valued identity. More broadly, religion gave participants a sense of moral agency, that is, the ability to be viewed as a good person. Myers (2015) argues that moral agency is too often overlooked in recovery programs. Religion gave participants at the Oaks not only a place to go and a sense of belonging, but a valued social identity and the feeling of being a right person. Sociologists have advanced our understanding of the relationship between identity and stigma (Marcussen, Gallagher, and Ritter 2019; Markowitz, Angell, and Greenberg 2011), and in this section we introduce readers to key ideas and theories about identity and its relationship to stigma. We start by explaining what sociologists mean by “self” or identity, and where it comes from, drawing primarily on the work of George Herbert Mead.2 Mead provided sociology with an interactionist account of selfhood, rooting the development of identity in our interactions with ­others. In his view, we have no identity outside of the social realm; fundamentally, “selves only exist in relation to other selves” (Mead 1934, 378). We only have a sense of “self” or who we are in terms of how ­others perceive us to be. Rather than a fixed structure, one’s self is best understood as a pro­cess that is continually negotiated in the course of our interactions with ­others. We all have experienced that sense of dismay when we recall a self we once ­were (that bratty kid, or the bully, or the know-­it-­all, or the class clown), but what we do not always realize is that a par­tic­u­lar “self” emerged in response to the expectations and perceptions of ­those around us at that time—be it parents, siblings, or peers. Mead defined the self in terms of its reflexive ability to be an object to itself; we can stand outside of our “selves” and see how o­ thers perceive our actions. Often referred to as the mirror model of consciousness, or the looking-­g lass self, we compare our self-­imagination with our perceptions of how ­others see us and modify our selves (or the pre­sen­ta­tion of that self) accordingly. Self-­ awareness arises when one can conceive of oneself as an object to another. This is termed reflexivity, and Mead argued that it develops in childhood during play and games where we learn to take the role of the generalized other. The generalized other is the “attitudes of the o­ thers who are involved in conduct” (Mead 1934, 283), and internalization of the generalized other is a key component of our social self (Mead referred to this as the “Me”—­the “who am I” we pre­sent to o­ thers). Mead used the example of a baseball game to illustrate the

Being a “Right Person” • 49

role of the generalized other. When playing baseball (or any game) you not only have to learn the rules of the game, but understand the likely actions of the other players in order to know what actions you must take to “win” (or stay in) the game. The generalized other (part of our social self) is constituted by socially agreed-­upon meanings, which arise out of actions that are shared and repeated by ­others in the course of our interactions. The generalized other is simply our understanding of what is socially acceptable be­hav­ior in any given situation. Many social theorists have conceptualized ­mental illness as the failure of the generalized other (Giddens 1991; Laing 1960; M. Rosenberg 1992). Schizo­phre­ nia in par­tic­u­lar is seen as the loss of the “me” self where the individual no longer shares the same intersubjectively defined real­ity most p­ eople in society experience. It is for this reason that many sociologists define m ­ ental illness as violations of normatively defined expectations for thought and actions (see especially Scheff 1984). ­Those who are alleged to be “mentally ill” simply do not conform to social norms, or they act in ways that are inexplicable to us. This is why treatment and recovery are so often defined in terms of “normalization”—­ the objective is to live a “normal” life, the life we collectively define as “normal,” generally by assuming appropriate social roles at a given stage of life. However, finding and fitting into “normal” social roles is difficult, making recovery an unrealistic goal for many PSMH (Myers 2015). A critical component of selfhood and the generalized other is role taking—­ the ability to take the role of the other. Language is critical to the ability to take the role of the other and thus internalize the generalized other into our social self (Mead 1934). Language not only describes our shared experiences; it can be used to create (or reflect) new meanings—­think about “memes,” a new word that reflects a new way of communicating. M. Rosenberg (1992) argues that ­mental illness can be understood as role-­taking failure, not on the part of the person alleged to be mentally ill, but in our (i.e., the generalized other, or society) ability to take their role. We find their thoughts and actions to be incomprehensible (see Horwitz 1982). M. Rosenberg (1992) goes even further and argues that ­those who are referred to as mentally ill are unable to take the role of the self—­they lack reflexivity. This can be what we “hear” when exposed to the words and phrases uttered by someone alleged to be mentally ill that make no sense to us, sometimes referred to as schizophrenic word salad. Language sets bound­aries to how we express what we see and feel, and it is hard to articulate an understanding of a world for which no words exist, as that world has not been shared by ­others. The lack of reflexivity is apparent in hallucinations and delusions, or in hearing voices, all of which point to a real­ity that is not shared by ­others.3 As described by Goffman (1961), ­those with ­mental illnesses lack a ­viable self that is socially recognized and accepted—­instead it is degraded, constituting

50  •  Ties That Enable

what we now refer to as a stigmatized identity. In order to be a person, ­mental patients must accept the psychiatric view of themselves as a social failure, as someone who must be fixed in some way, and what must be fixed is who we are (Goffman 1961, 132). Goffman’s account of the moral ­career of the psychiatric patient brings into sharp focus the way in which selfhood is constructed and reconstructed in accordance with institutional frameworks: “The self, then, can be seen as something that resides in the arrangements prevailing in a social system for its members. The self in this sense is not the property of the person to who [sic] it is attributed, but dwells rather in the pattern of social control that is exerted in connection with the person by himself and ­those around him” (Goffman 1961 168). Goffman also introduced key ideas about social stigma and is widely cited by researchers who are extending our understanding of the relationship between ­mental illness, identity, and stigma (Marcussen, Gallagher, and Ritter 2019). We have known for some time that stigmatized beliefs act as self-­f ulfilling prophecies, with PSMH feeling themselves less capable, which in turn results in social isolation, which then further reduces self-­esteem, thereby increasing social marginalization. What we now understand more fully is the ways in which both self-­stigma and social stigma interact to result in lower self-­esteem and self-­efficacy, lower levels of life satisfaction, and increased symptoms (Markowitz, Angell, and Greenberg 2011). What o­ thers think of a PSMH is critical to recovery, as is the individual’s self-­view. Marcussen, Gallagher, and Ritter (2019), in their study of 156 adults in treatment in a community ­mental health center, found that ac­cep­tance of a stigmatized identity (“My m ­ ental illness is a major part of who I am”) was linked to poorer self-­evaluation and greater distress. Markowitz, Angell, and Greenberg (2011) have data not only on self-­ stigma, but on the perceptions of their respondents’ ­mothers (referred to as reflected appraisals). Individuals who ­were perceived positively by their ­mothers (i.e., they ­were seen as competent and capable) had higher levels of well-­being and fewer symptoms. More negative appraisals ­were associated with relapse and increased symptomology. Markowitz, Angell, and Greenberg (2011, 160) argue that recovery is affected by both “stigmatized self concepts” and “feedback from significant o­ thers.” What is critical is that a growing body of research points to the importance of one’s view of self as playing an integral role in recovery, and identities that can ­counter (or resist) the stigma of ­mental illness are critical (Wright 2012). The Oaks, as a religious enclave community, provided participants with a place they could call home, where they ­were accepted on an equal footing and with a socially valued identity. For many of the participants, the Oaks reaffirmed impor­tant values and was an impor­tant source of moral agency, or being a “right” person. Religion was central to access and ac­cep­tance at the Oaks, providing not only social bonds, but a sense of belonging. ­There

Being a “Right Person” • 51

­ ere not many other places where participants felt on equal footing with ­others, w or where they could fulfill normal roles. Participation in religious rituals and singing with staff created a special space of community solidarity. As such the Oaks is a critical case for understanding how enclave communities can be an impor­tant source of solidarity. We turn next to a consideration of the larger network of social ties and relationships experienced by PSMH.

4

­Doing the “Best” We Can Developing Social Relationships and Overcoming Isolation In this chapter we examine the experiences of persons living with serious ­mental health prob­lems (PSMH), focusing on their marginalized social status and social relationships. Serious ­mental illness is a highly stigmatized condition, and the illness itself limits opportunities for social interaction, education, and employment, resulting in a high degree of social isolation. Social isolation itself ­causes stress, which can result in poorer affect, feelings of alienation, and decreased feelings of control and self-­esteem. Loneliness itself can contribute to ­mental health prob­lems, and “can cause distorted social cognition and less ability to acknowledge ­others’ perspectives” (Schutt and Goldfinger 2011, 31). Social relationships not only overcome loneliness; they are critical to recovery and community integration. Our social ties provide us with not just a sense of belonging and social supports, but social influence, comparisons with o­ thers (references), and some purpose and meaning. Social ties can be within a given group providing for bonding among members, or between dif­fer­ent groups, thus allowing for bridging ties (Putnam and Campbell 2010). This is an impor­ tant distinction when considering the social supports of PSMH, who may lack both bonding and bridging supports due to the stigma associated with severe ­mental illness. We saw in the last chapter that shared participation in religious activities and rituals provided for bonding social ties and hence a sense of 52

­Doing the “Best” We Ca • 53

belonging. However, bridging social ties can enhance social status. While t­ here is an extensive lit­er­a­ture on the role of social supports for PSMH, research has neglected the role of “members of lay community networks” (Perry 2016, xviii). The Oaks is an impor­tant source of lay community networks, which provide for bridging ties as well as social bonds. In this chapter we provide insights into how individuals living with chronic m ­ ental health prob­lems are “­doing the best they can” in the face of marginalization. While individuals perceive ­family to be an impor­tant source of social support, in fact it is fellow participants at the Oaks who provide ­actual social supports and opportunities for dif­fer­ent types of relationships via network activation.

The Critical Role of Social Support Social relationships are critical to both physical and ­mental health, and the analy­ sis of social bonds, network ties, and social integration has been central to so­cio­ log­i­cal inquiry beginning with the work of Durkheim. Simply put, our networks provide us with critical group memberships that can both alleviate our exposure to stress and buffer us from the effects of stress. ­There are many types of social support. We may receive primarily emotional support (love, empathy, understanding), and/or structural forms of support such as money, or a place to live, or some combination of the two. Emotional support, or perceived social support, refers to the belief that a person has social supports available to them when needed (Brown and Ciciurkaite 2017). Structural forms of support include our ­actual network ties (how many ­people who can provide us with social supports) as well as the concrete help we receive from o­ thers, which is referred to as tangible and/or instrumental support. Our perceptions of social support has more to do with the sense that we have supports (perceived or emotional), which may not be the same as the ­actual help we receive from our social support networks. Perceived social support has consistently been found to have a more power­ ful impact on health than ­either structural (the a­ ctual network ties we have) or received support, but we do not know exactly why. It maybe that our perceptions of social support are not just a reflection of our concrete social supports at a given time but may be ­shaped by our past experiences of social support, which have helped s­ haped our personality. As is so well argued by Brown and Ciciurkaite (2017, 214), “the perception of being loved, valued, and able to count on o­ thers must be a function of one’s history of supportive and unsupportive experiences.” Past experiences are certainly critical to understanding the salience of perceived social supports for PSMH, as the nature of the psychiatric illness itself, combined with the stigma of serious ­mental health prob­lems, plays an impor­tant role in the reduced networks of PSMH (Perry 2016). While t­ here is a g­ reat deal of attention given to how social support can ­ ental disturbance, Thoits (1995) has argued that researchers have not reduce m

54  •  Ties That Enable

examined the intervening mechanisms by which social support influences one’s ability to cope, or the se­lection of coping mechanisms, or how social support affects feelings of self-­esteem and mastery (which are so crucial to ­mental health). Furthermore, Thoits (1995) notes that we do not understand how one’s existing social network and perceived social support influences help seeking be­hav­iors. Often a families’ shame, or ignorance of the real­ity of ­mental illness, can prohibit an individual from seeking professional help or therapy. Alternatively, a f­ amily with a good bit of positive experience with professional care providers may routinely access ­mental health ser­vices, hence forestalling prob­lems that can lead to stress down the road. A final issue needing further research is how stress affects social support (Thoits 1995). Living with a serious ­mental illness can have both negative and positive impacts on social ties by altering the social networks within which individuals are embedded. We do know that PSMH often “churn” through their core networks, experiencing high levels of stress or trauma (such as ongoing psychiatric crises), exhausting key supports (often due to caregiver burden), and hence needing to find new forms of social supports (McConnell and Perry 2016, 121). While many PSMH may feel comfortable within the social bonds provided by f­ amily, they may need to reach out to ­mental health providers and form bridging ties in order access external resources to achieve a higher degree of in­de­pen­dence and community integration. When thinking about the types of social supports available to PSMH, it is impor­tant to distinguish between everyday social supports and stress-­related social supports (Thoits 2011a). Everyday supports are cumulative and can help reduce the occurrence of stressful events and also contribute to a sense of perceived support, positive well-­being, and self–­esteem, which can all help alleviate the negative effects of stress. In contrast, stress-­related social support is more focused and consists of problem-­related social supports that help an individual cope with the effects of a stressful situation. We also need to distinguish between two groups of supporters: significant ­others and similar ­others (Thoits 2011a). Significant ­others are ­family members and partners, and they may not experience or understand the stress or stressor. While significant o­ thers do offer vari­ous forms of social supports, their role in reducing the effects of the stressor may be ­limited. In contrast, similar o­ thers are ­those friends or colleagues who have familiarity with the source of the stressor and can provide empathy, information, and advice. For example, while core primary ties such as ­family are impor­tant sources of social support for PSMH, ­family members may not be able to understand the experience of living with a serious ­mental illness, of feeling isolated, or hearing voices, or feeling suicidal. It is for this reason that in early research on the social relationships of PSMH, Estroff discovered that they “chose to act primarily with each other” (1981, 249) ­because they preferred interactions with other mentally ill p­ eople who shared similar lived experiences.

­Doing the “Best” We Ca • 55

­ ese kinds of social relationships provided for bonding ties, and we learned Th in the last chapter that religion also allowed participants to bond with staff. Recent research has found that a serious ­mental illness can create a network crisis, with individuals “churning through” their network ties (Perry and Pescosolido 2015). An individual’s core identity may be impacted by a psychiatric diagnosis, and key supports may dis­appear in the face of both the exacerbation of psychiatric symptoms and the resulting social stigma. While the view of ­mental illness as having a ge­ne­tic or biochemical origin would seem to reduce stigma, in fact it has increased stigmatized beliefs, as PSMH have been seen as inherently dif­f er­ent. ­Family members may be suffering not only from caregiver burden and a lack of reciprocity for their supports; they may also feel some need to distance themselves in order to avoid identification with a stigmatized identity. That is, public stigma is clearly linked to self, or internalized stigma (Marcussen and Ritter 2016), which may extend beyond the labeled individual to his/her ­family and friends. In seeking new networks, PSMH need to look to communities that can provide not only social supports, but a valued social identity (Lincoln and Adams 2016). As we saw in the last chapter, participation in a faith-­based community provides for positive social comparisons, thus raising self-­concept and counteracting pro­cesses of self-­stigma. In this chapter we examine participants’ experience of isolation and the role of vari­ous types of social relationships in overcoming their marginalized social status. We begin by describing participants’ marginalized social status and their sense of social isolation.

Marginalization, Exclusion, and Isolation Forms of social marginalization include stigma and social exclusion related to symptoms of serious ­mental illness as well as having multiple comorbid physical illnesses and impairments. Economic marginalization results from poverty, low educational attainment, and a lack of access to material resources. All program participants at the Oaks had a diagnosis of serious ­mental illness and ­were disproportionately older and African American. Many lived in poverty, and more than 30 ­percent had been homeless at some point in their lives. Most participants received Supplemental Security Income (SSI), which was not supplemented by other sources, and thus had very low monthly incomes, generally less than $1,000. The majority lived in licensed and unlicensed (i.e., illegally operated) small low-­ income personal care homes. In many cases, program participants used most of their monthly income to pay for board and care in ­these facilities (Georgia Department of Community Health 2013). Residents also receive a small personal needs allowance ($5 per week at the time of data collection) from their Social Security payee, and many program participants have only this small stipend to pay for toiletries and other personal needs. In addition to other ser­vices, many

56  •  Ties That Enable

received clothing, toiletries, and help with showers and personal hygiene through the Oaks. Carl, a thirty-­year-­old African American male with schizo­phre­nia, said about his social and economic position, “It seemed like when the ­mental illness hit me, every­thing started g­ oing downhill for me.” Many participants have comorbid physical ailments, which include diagnoses of diabetes, obesity, and high blood pressure, and require ongoing physical care in addition to ­mental health treatment. The Oaks recognizes ­these challenges and provides basic medical care at no additional cost to participants. The ­limited income participants receive, combined with their ­mental and physical impairments, substantially restricted their ability to live in­de­pen­dently. Despite t­ hese constraints, participants frequently spoke of their hopes of one day living in­de­pen­dently, saying t­ hings such as “I’m g­ oing to get my own place” or “I’m goin’ to move soon.” Lack of income also reduced participants’ in­de­ pen­dence by limiting access to transportation. ­Will described his inability to use public transportation to travel outside of his neighborhood: “I used to r­ ide Marta, but I would get on the train and ­ride all the way to the airport [south of the city] and get lost.” Related to most participants’ l­ imited income is their low educational attainment. As mentioned ­earlier, almost all of the respondents interviewed had less than a high school degree. The Oaks provided the monetary funds for several of ­these participants to try to obtain their GEDs in an attempt to decrease their economic marginality. Jean described the challenges related to her m ­ ental illness she had to overcome to obtain her GED while attending the center: “I’d back out [of getting my GED] or ­things would happen that would like put me in transition mode, worried I’d have to move or something ­else would happen that would hinder me from g­ oing back. Last time I went [to GED classes] it took a lot of motivation and determination to get it, but I managed to get my GED.” Prob­lems related to social and economic marginality contribute to difficulty in maintaining relationships and employment outside of the program. Robert, the former executive director of the Oaks, eloquently summarizes the real­ity of life for many PSMH: “From talking to ­people and observing their home life, most of our ­people have very ­limited social circles. Beyond [attending] church [­here], personal care homes, and any continued f­ amily connections they r­ eally ­don’t keep in contact with other p­ eople. Most d­ on’t have access to a computer or a phone or any way to travel to see ­people so they d­ on’t have a way to keep in contact with old friends. Plus, if they grew up in an institution—­jail, foster care, hospitals, etc.—­then they w ­ ouldn’t have maintained any friendships in ­those circles.” Staff ­were aware of ­these social conditions, and they attempted to limit the overwhelming sense of marginalization experienced by participants. Chelsea, the vicar, described the way the Oaks addresses this marginalization: “I think, t­ here has always been a sense of providing community and meaningful activities to p­ eople with m ­ ental illness, particularly t­ hose in poverty, although,

­Doing the “Best” We Ca • 57

we d­ on’t have any participation criteria. That is what we tend to get [participants], ­because that is the population most underserved.”

Social Relationships and Social Networks As part of in-­depth interviews with twenty-­seven participants at the Oaks, M. Smith (2017) utilized Antonucci’s (1986) hierarchical network mapping technique to identify characteristics of participants’ social support networks. A diagram consisting of three concentric circles was presented to participants, who w ­ ere then asked a series of questions to determine the size, composition, and nature of their social networks. For the inner circle, participants ­were asked to list ­people they ­were so close to that they could not imagine living without them. Next, participants ­were asked to list in the ­middle circle p­ eople who they ­were close to, but not as close to as ­those in the inner circle. For the outer circle, participants w ­ ere asked to list ­people they ­were somewhat close to but had not yet mentioned, yet still wanted to include in their networks. Following the initial listing of p­ eople in the social network map and again in the concluding question section, participants ­were asked, “Is ­there anyone ­else you would like to add to your circles?” Most commonly, participants said they had already listed every­one they wanted to list (figure 4.1). Following the questions regarding closeness, participants w ­ ere asked a series of questions about the ­people listed in the social network map. M. Smith (2017) first had the participant report the gender and race of each network member. Next, she asked specific questions regarding the history and nature of each social relationship the participant listed. Th ­ ese subsequent questions included “What is your relationship with the person you listed?” “How long have you known this person?” “Where did you meet this person?” “How often do you speak to the person?” “Does this communication usually take place face-­to-­face or by phone?” She then asked participants to tell her how long it had been since they had spoken to the person. As we saw e­ arlier in this chapter, PSMH are often excluded from certain social groups due to their symptoms, stigma from the community, and as a by-­ product of their comorbid physical health issues. Multiple psychiatric hospitalizations also disrupt relationships with o­ thers, negatively impacting the few existing relationships some have with ­family members. The data M. Smith (2017) collected show that it was more common for participants to list ­family in the social network map than it was to list any other type of social tie. ­Family was clearly identified as the most critical form of social bond, with 93 ­percent of the participants including at least one f­ amily tie in their inner circles. This finding is consistent with other studies conducted among socially marginalized individuals in a group setting (Perkins, Ball, Kemp, and Hollings­worth 2013) and likely derives from participants’ desire to have social relationships

58  •  Ties That Enable

Inner Circle 9 family members 4 fellow participants 1 staff/volunteer

Middle Circle 2 family members 10 fellow participants 4 staff/volunteers

Outer Circle 2 family members 10 fellow participants 1 staff/volunteer

FIG. 4.1   Network Mapping of Social Ties

consistent with societal norms. At the same time, most only saw ­family members “rarely,” “sometimes,” or “once in a blue moon,” or had not seen them in several years. It was clear that in filling out their network maps, participants ­were describing their perceived social support networks, and identified ­family as critical to emotional or perceived supports. While PSMH knew ­family was impor­tant, they often felt marginalized from their f­ amily. During an informal interview, Dean explained this type of marginalization when asked how he was recovering from a recent inpatient stay at a local psychiatric fa­cil­i­ty: “My ­brother is irritated with me about [the hospitalization]. He d­ oesn’t want to talk to my psychiatrist or me.” Instead, participants generally valued their social relationships with other participants and found them meaningful. Fellow program participants w ­ ere most often listed in the ­middle circle (33 ­percent), although close to one-­third listed other participants in their outer circle (29  ­percent) and a quarter (25 ­percent) listed other participants in their inner circle. Although some relationships ­were more negative (e.g., conflictual or predatory), most relationships ­were positive and meaningful (i.e., supportive and involving mutual obligation). Many of ­these more positive relationships developed out of a commonality of experience (i.e., histories of chronic ­mental illness and associated social and

­Doing the “Best” We Ca • 59

economic marginality). ­These shared experiences enabled participants to form bonds with ­others at the center that they have generally been unable to develop with members of the wider community. A staff member described the nature of ­these bonds: “A lot of our folks have schizo­phre­nia and with that comes all of the negative symptoms like flat affect and incoherent thought and that . . . ​ is challenging to any relationship. When you c­ an’t communicate the way you want to communicate and y­ ou’re not responding the way another person [finds] appropriate, it makes relationships more difficult. . . . ​­Here, we understand that. ­People who . . . ​are creating relationships with [one another ­here] are experiencing the same ­things.” Another notable finding was that participants rarely listed anyone in their outer circle. To understand this finding, staff members ­were asked why they thought participants listed so few ­people in their outer circles. The former executive director, Robert, shared an impor­tant insight related to participants’ marginal social and economic position: “As I think about my own tertiary relationships, ­those relationships tend to be facilitated by work, school, leisure. . . . ​ With most . . . ​participants not having access to work, school, leisure . . . ​I imagine they d­ on’t have much of a venue for forming tertiary relationships.” ­These “tertiary” relationships are impor­tant bridging ties, which can provide PSMH valued social roles outside of the Oaks. Clearly, the most obvious and impor­tant goal for any community support program is to provide participants with a source of social support with the opportunity to develop friendship ties with other participants. Brown and Ciciurkaite (2017) draw on the famous Beatles song to describe how we all need to “get a ­little help from my friends.” Likewise, Alex, when asked to list the ­people with whom he was so close he could not imagine his life without them, immediately mentioned fellow participants at the Oaks: “My friends . . . ​I got friends like . . . ​Craig, Dan, Brad.” Another participant, Leo, commented that he was not close to many ­people, but his responses indicated that he was close to Ron, also a ­house­mate, with whom he chose to spend his time while at the Oaks: “Yeah, Ron is close to me; I’d put him in t­ here [the ­middle circle].” At the same time, the symptoms of ­mental illnesses can also negatively impact relationships within the program. While prolonged and sporadic absences do not necessarily result in strained relationships at the Oaks, some participants reported feeling insecure about the effects the symptoms of their ­mental illnesses have on their relationships with other program participants. Jean said: “Yes, that [symptoms of my m ­ ental illness] is a major prob­lem. It is ­really hard for me to feel like I’m a friend or be able to keep a friend from the beginning up u­ ntil the m ­ iddle to the end. Basically, the w ­ hole t­ hing about friendship is ­really difficult for me. My socialization and my anxiety . . . ​can be very distorted at times where I’ll worry about what [other program participants] are thinking or I’ll be jumping the gun about what they may be thinking and

60  •  Ties That Enable

t­ hey’re not and sometimes that’ll ruin relationships and then sometimes just ­because I ­won’t speak up and talk to somebody.” Charlie echoed this sentiment, saying that his “anger during episodes keeps me from being with other ­people [i.e., at the Oaks].” He indicated that he worried about how his symptoms would be interpreted or misinterpreted. While symptoms of ­mental illness sometimes separated participants, physical ailments could serve as a point of connection inside the program. For example, Constantine and Walter originally knew of each other from the Oaks, but this bond was strengthened when they happened to be in the county hospital (a local safety net hospital where most receive care) at the same time for the treatment of diabetes. Constantine and Walter endearingly referred to each other as “Suga’,” short for the colloquial term “sugar diabetes.” While diabetes is not a condition one would select, it is also not as stigmatized as that of severely mentally ill and allows for a bond to be forged outside of a shared marginality.

Types of Social Relationships What types of relationships did participants at the Oaks describe, and what role did religion have to do with ­these relationships? M. Smith (2017) identified five relationship types: (1) lookout or helping relationships; (2) friendships; (3) romantic relationships; (4) conflictual relationships; and (5) predatory relationships. Social relationships are both positive and negative, and we illustrate the ways in which the Oaks provided opportunities for network activation (i.e., the creation of new forms of social support) that resulted in both positive and negative social ties. Most critically, participation in programs offered by the Oaks created an entry in a more enduring social relationship via the creation of lookout or helping relationships. Participants frequently expressed concern that someone might be left out of an activity, or more commonly, without a ­ride. Often, participants would ask the van driver to wait for another participant who was late to board the van or go in search of a participant who they knew needed a ­ride to a program activity, such as art or yoga practice. It was common to hear participants board the van and say, “She’s coming,” or “Wait, So and So ­ain’t on yet.” Another common “lookout” or “helping relationship” was ensuring that fellow participants’ basic needs and wants w ­ ere met. For example, a few younger or more able-­ bodied participants routinely “looked out” for el­derly or physically disabled participants. Examples include helping ­others get on and off the church van, providing assistance to ­those needing help moving to dif­fer­ent locations on the campus, or helping p­ eople get food and carry it to a t­ able. ­These helping relationships provided individuals with an impor­tant sense of belonging and often led to a more enduring friendship. Friends w ­ ere trusted, “somebody you can divulge your secrets to. You can count on them. They w ­ on’t

­Doing the “Best” We Ca • 61

turn you away if you show up on their doorstep.” Friends could be counted on, even in the face of crisis: “Friends stick with you when something’s wrong. You ­don’t carry your burden to every­one—­only your friend.” A female participant indicated that a friend needed to be someone who would contribute to her recovery and be a positive influence in her life. She described how she and another female participant she considered to be a close friend w ­ ere working together to improve their life circumstances: “We’ve got our GED test g­ oing on, classes, and we both de­cided we would get our GEDs together.” The program director describes how relationships formed at the Oaks often become close and long-­lasting, and also how they frequently linked other members of participants’ social networks together, widening their social circles and contributing to the sense of community that exists within the program: [­There are] long, long-­term friendships. We have ­people who have been coming to the program for fifteen years now. They have known each other [for a] very long [time] and their larger networks start connecting, like the program participants’ parents, their parents, become in a relationship with the church and the church with their ­family, so the networking starts getting broader and broader in a way that took me prob­ably a year and a half to realize that one of our volunteer van driver’s mama knows program participant X’s step-­dad, who lives over ­here and they do ­things, you know. It’s just like any other social network. ­There’s connection all over the place, platonic, romantic, sexual, nonsexual.

While many participants at the program developed and maintained romantic relationships outside of the center, some of ­these relationships spilled over into the center. Three long-­term heterosexual relationships existed before data collection began at the Oaks and ­were still intact. ­These long-­term relationships provide examples of long-­term stability and intimacy. One of ­these relationships developed at the center, while relationships among the other two ­couples developed within a personal care home setting. ­These relationships w ­ ere manifested differently during program hours. One c­ ouple maintained close physical contact from the time they arrived at the center u­ ntil they left in the early after­noon. They ate their meals near each other in the common room and sat together on the picnic benches. This ­couple rarely interacted with any of the other participants, although they did not appear to be antisocial, ­because they routinely joined ­others in the smoking area. The other two ­couples arrived on the van together and would eat breakfast in the same group, but typically engaged in dif­fer­ent programming and interacted with many other participants at the center. Th ­ ese friendship ties ­were impor­tant to ­these ­couples, especially during times of emotional strife within the ­couple, such as when one partner failed to adhere to medi­cation or when ­there was a disruption in a relationship due to a partner’s inpatient hospitalization.

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In a few cases, t­ here was also evidence of unrequited love, that is, when one participant expressed a desire for romantic attachment and another participant, the object of this desire, expressed disinterest or repulsion. A participant named Robert described such a scenario: “You know Miss Caroline, well she was in love with me, but I ­didn’t want anything to do with that. I was always trying to avoid her.” In the case of both requited and unrequited love, flirting was common and included compliments such as “I like your hair” or questions like “Do you have a boyfriend?” as well as physical advances, such as rubbing someone’s back. Of course, not all relationships ­were positive, and some participants experienced negative relationships with other participants. Although t­ hese conflicts ­were subtle, some resulted in minor vio­lence at the center, such as slapping, hitting, or pushing. Th ­ ese clashes rarely disrupted daily routines, as participants ­were accustomed to ­these disturbances and had learned to “work around each other,” according to the executive director. Such altercations tended to reoccur among the same participants; generally a certain group who had difficulty getting along well with ­people outside of the program often found it hard to get along with ­others inside the program. Similar to participants’ tendency to sanction ­those who fail to help out when needed, negative be­hav­ior was quickly sanctioned by other participants. One was observed yelling in response to some physical altercation, “Hey! Stop it! I’m watching you.” A very small number of relationships are predatory, e­ ither sexually or financially, and w ­ ere not tolerated by staff at the Oaks. While t­ hese relationships occur with much less frequency than other types of relationships, they did exist and are impor­tant to acknowledge. Unfortunately, predators who themselves suffer from ­mental illness sometimes find their way into the program; if perceived as posing a threat to o­ thers, they w ­ ere asked to leave. The vicar explained the program’s position with regard to sexual predation: “­There are times when ­ ere puts I have concluded, concerning certain p­ eople, that allowing them to be h the rest of the ­people at risk in the nature of sexual predation of some kind and I’ve had to tell ­people we cannot, it breaks our hearts to say this, but we c­ an’t deal with it. We d­ on’t have . . . ​someone to accompany you through the program day to make sure you ­don’t do anything harmful to other ­people.”

Bridging Ties Facilitated by the Oaks In addition to social bonds (which link individuals with a given group), the Oaks also promoted bridging social ties between participants and groups outside of the Oaks. A very direct form of enablement came from the Oaks forming mediating bridges with the National Alliance on ­Mental Illness (NAMI). NAMI is nonprofit organ­ization that advocates, educates, and leads events to combat stigma (see more about NAMI in chapter 6). They have a strong

­Doing the “Best” We Ca • 63

presence at the state and national levels in terms of their lobbying efforts to protect the rights of mentally ill persons. The Oaks hosts a NAMI connection group ­every Thursday after­noon, and the members often walked together in the citywide NAMI walk. Throughout the observation period, ­there w ­ ere several instances when connection group leaders recruited participants at the Oaks to come to the annual walk. Many participants would travel to the annual statewide NAMI conference. While ­there, they attended pre­sen­ta­tions and discussion panels that focused on ­mental health topics and talked to other participants about their lived experiences with m ­ ental illness (M. Smith 2017). The presence and support of a NAMI connection group at the Oaks is the main ave­nue by which participants engage in direct advocacy and empowerment, and by which they work to reduce stigma in the community. Participation in NAMI groups and the yearly conference facilitated empowerment and can lead to what some program participants describe as “self-­ directed recovery.” A sixty-­four-­year-­old man (recently in recovery from a manic episode during which he was incarcerated for several months) describes how the Oaks and its association with NAMI assisted in his self-­directed recovery: “I d­ on’t say it has made drastic changes in my life. It has helped to get me back to a recovery mode and . . . ​it kept me to focus on issues with my ­mental health. I have to pay attention to and try to grow and learn and cope and apply the coping skills that I’ve been given from the Oaks and NAMI and the other support group to my daily life to be comfortable.” Another excerpt from field notes describes an interaction between two African American men where one is describing the benefits of participating in the NAMI connection group: “Man, you r­ eally o­ ught to think about ­going. It’s ­really helpful and fun. Th ­ ey’ve got good food. Plus, the groups are r­ eally good. They teach you skills about how to h ­ andle your emotions.” He then went on to or­ga­nize an impromptu meeting with the other gardeners. In attending this meeting, the second author encouraged the gardeners who attended the NAMI annual statewide conference to talk about their empowering experiences at the conference. During the meeting, the participants who attended the conference encouraged the other gardeners who did not attend the NAMI event to participate in the NAMI connection group in the ­future so that they would be eligible to attend the annual conference the following August. The individual quoted above discussed the value of the sessions and how he learned some coping skills to deal with the symptoms of his ­mental illness. Another man described how much he liked the keynote speaker and how he could relate to him. He, too, had feelings of anger about his m ­ ental illness and found it helpful that he was not alone in his thoughts and feelings about ­mental illness. A ­woman told a story about how she thought she was ­going to one session but ended up in a session that talked about values: “You know you always think about values as being something more serious like honesty and

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responsibility, but ­there are other values too, like having fun. That’s the ­thing that r­ eally struck me was having a value of having fun, which is just as impor­ tant as honesty and responsibility.” The bridges to other PSMH via NAMI not only gave participants a sense of connection; they provided impor­tant social skills and enablement, and provided a path for them to direct energy ­toward working to change the social structures and systems that marginalize them.

Discussion Descriptive results from social network mapping show that on average, the size of participants’ social support networks is small. Participants generally include ­family members in their inner circles as the ­people they felt close to and could not imagine living without, w ­ hether they had a relationship with them or not. Fellow program participants ­were placed in the ­middle circle or in the outer circle. The qualitative data provide insight into this finding and show that program participants develop meaningful, long-­lasting relationships not captured by the network map. However, consistent with findings from social network mapping, the qualitative data also demonstrate that many participants restrict the number of ­those they allow to become close. A female participant employed strategies to manage relationships and limit the emotional cost of forming too many close ties: “I d­ on’t r­ eally think I need that many friends. If I had that many friends, I ­wouldn’t be able to live ’cause it’s like one of ­those ­things where ­there’s such a ­thing as too many friends and then ­there’s such a ­thing as not enough or no friends. But I want to have—­I want to have a balance. . . . ​I’m not ­really wanting a lot of friends. It’s too much to h ­ andle.” During the early stages of deinstitutionalization, many researchers believed that the relationships that PSMH had with ­others w ­ ere one-­dimensional and not reciprocal. However, this research focused on relationships with other ­family members, assuming other types of relationships ­were non­ex­is­tent. Estroff (1981) was among the first to recognize that PSMH preferred to have supportive and meaningful relationships with each other, a finding replicated by Yanos, Rosenfield, and Horwitz (2001). The ethnographic data presented in this chapter provides insight on the context in which t­hese meaningful relationships form. Individuals living with severe ­mental health prob­lems continue to be socially and eco­nom­ically marginalized. Th ­ ese forms of marginalization are alleviated by attendance at a faith-­based day program. In this context, participants are afforded opportunities that they would not other­wise receive in their daily circumstances, and a shared appreciation of religion was an especially impor­tant source of social bonds. Bonding relationships among the day program participants in this study w ­ ere overlapping and multidimensional. Although some ­ ere conflictual, most relationships among participarticipants’ relationships w pants w ­ ere positive and provided an impor­tant source of social support. Th ­ ese

­Doing the “Best” We Ca • 65

relationships are particularly impor­tant given the many challenges that face PSMH. The potential for isolation is extremely high based on the constant disruption due to hospitalizations and changes in living conditions. As a consequence, PLMH often churn through their supportive social networks, especially f­amily members, who may not fully understand the experience of living with severe ­mental health prob­lems. However, at the Oaks, perhaps ­because of the power of a shared appreciation for religion and faith, t­ here was l­ ittle evidence of churning or frequent turnover of friends. Many of the friendships described by participants started at the inception of the program over eigh­teen years ago. While f­ amily is an impor­tant source of perceived social support, participants often found more tangible supports from “similar ­others” who shared their experiences, creating ties that ­were binding and that provided a sense of inclusion and concrete supports—be that a helping relationship, an enduring friendship, or a romantic tie. When PSMH return from the hospital or they are able to obtain transportation from their new personal care home, they can easily slip back into existing social relationships that have been formed at the Oaks, whereas f­ amily members may be e­ ager for some distance and respite from the trauma of hospitalization. Day programs and other community supports provide the ongoing structure that allows for not only network activation (i.e., the creation of new network ties) but engagement with “similar” network members, creating a sense of belonging. Given the lack of concrete ­family support that many participants experience, having access to ­these other types of continuous relationships is especially impor­tant. Clearly, the Oaks provided an impor­tant ave­nue to informal social supports and shared bonds among participants, and t­ hese ties provided participants with a valued social identity and status. In addition, the Oaks offered impor­tant “bridges” to developing relationships outside of the program with another m ­ ental health organ­ization. NAMI is an impor­tant organ­ization that not only links PSMH to each other; it also engages individuals in a wide variety of advocacy activities and should ­ ese more formal social supbe viewed as an impor­tant source of enablement. Th ports can enable the sense of empowerment and mastery so critical to not only personal well-­being and self-­esteem, but to a necessary mobilization to effect social change. In the next chapter we examine in greater detail other types of opportunities afforded to participants at the Oaks and address the kinds of formal social supports provided by community-­based programs that provided impor­tant bridges to the larger social environment.

5

Us and Them Confronting Recovery in the Face of Marginalization In this chapter we move to the meso level (see figure 1.1) and focus on vari­ous ways in which community ­mental health care organ­izations, m ­ ental health providers, and peers can provide the formal social supports that can enhance the lives of persons with serious ­mental health issues (PSMH). ­There is a notable shortage of community-­based m ­ ental health facilities and providers, with jails and prisons providing more m ­ ental health care than any other setting. Consequently, the majority of p­ eople with severe ­mental health prob­lems are untreated. This may seem surprising, as ­there are a number of dif­fer­ent kinds of places where m ­ ental health care is delivered, which can be very confusing to anyone seeking care for themselves or a loved one. A key distinction is ­whether ­mental health care is delivered by a specialist organ­ization that provides only ­mental health ser­vices (such as a psychiatric hospital or unit, or a day treatment program) or in a general medical setting where other health ser­vices are provided (for example, a clinic or nursing home). In terms of specialty ­mental health care, outpatient facilities are the most common (Dobransky 2017). They can be ­either profit-­making or nonprofit, and public or private—­although the number of for-­profit facilities has been growing. However, the distinctions between ­these types of treatment facilities are fuzzy, as most depend on Medicaid for reimbursement. Public sector dollars pay for private sector care for t­ hose with

66

Us and Them • 67

the most serious ­mental health prob­lems, and ­there simply is not enough funding to provide the full range of ser­vices that are necessary. Community m ­ ental health care organ­izations include general programs (community m ­ ental health centers, or CMHCs) and more specialized community support programs (CSPs) for PSMH and serve an impor­tant mediating role in that they work to link PSMH to the larger social structure and thus meet the mandates of community integration. A major consequence of the community ­mental health care movement was an emphasis on rehabilitation, as opposed to merely treating symptoms, favoring a social model over a medical model of care. Case man­ag­ers and other ­mental health providers provide a critical mediating function—­standing between the individual client and the wider social environment (Gerhart 1990, 207). As envisioned by early proponents of community-­based care, community ­mental health care centers would not only help individuals develop skills to live in the community; they would also foster community attitudes of tolerance and reduce stigma (Adler 1982; Bockoven1972). Yet CMHCs ­were never given the basic resources to accomplish the first goal (enhanced capabilities), and we still have not found ways to reduce societal stigma. Community ­mental health care organ­izations are charged with implementing the core princi­ples of recovery via the utilization of evidence-­based practices (Dobransky 2014; Doub, Morrison, and Goodson 2010). As a society, we continue to expect that poorly funded and inadequately resourced organ­izations and m ­ ental health providers can meet the lofty goals of community integration and recovery for individuals who are socially marginalized. With the emphasis on empowerment and recovery, PSMH themselves have provided impor­tant sources of peer support (Neugeboren 1999). In this chapter we examine the vari­ ous roles that CMHCs, case management, ­mental health providers, and peer supports have played in advancing the goals of community integration and providing bridges between their clients and the larger community. Peer specialists, or “prosumers,” are an underutilized resource, and their active involvement in ­mental health programs can lead to a more recovery-­oriented workforce. Formally educated and credentialed m ­ ental health providers can play an impor­tant role in training prosumers, although standards for licensing vary widely from state to state. In this chapter we advocate the support of cross-­training that ­ ental health professionals, advocates, consumers, ­family members, involves m and volunteers in workshops where they learn from each other and develop creative solutions to the dilemmas of recovery in their communities.

Recovery as Normalization Psychiatric rehabilitation emphasizes “normalization”—­whereby PSMH can live a “normal” life in the community. However, “what is normal is problematic”

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(Schutt and Goldfinger 2011, 45). What is normal for one group may not lead to an improved quality of life (what recovery promises) for another group. Ideas about normalization (as well as empowerment and recovery) are based upon conformity to Western ideals of in­de­pen­dence and self-­reliance. Rehabilitation (as opposed to treatment that is based upon a medical model of cure) provides an impor­tant socialization function—­PSMH learn the appropriate social norms and the necessary skills to fulfill social roles. In accordance with the ideals of community-­based care, emphasis is placed on in­de­pen­dent living and employment as opposed to communal living environments where individuals receive ongoing daily social supports. The prob­lem with normalization is the nature of serious, per­sis­tent ­mental health prob­lems. Serious ­mental illness is a chronic health condition, and many PSMH need long-­term, continuous care which involves coordination of ­mental health, physical health, and social welfare programs to achieve the goals of recovery (Mechanic 2006). Case management has traditionally fulfilled this role, and is designed to ensure continuity of ser­vices and overcome system rigidity, fragmented ser­vices, and improve access (Dill 2001). Providing and coordinating diverse ser­vices costs money, and ­there is l­ittle evidence that the resources for the long-­term care and community supports required by ­those PSMH are forthcoming. Furthermore, stigma and discrimination remain formidable barriers to access to m ­ ental health care (Doub, Morrison, and Goodson 2010). Over the past de­cades ­there has been continued focus on helping PSMH develop social skills, find employment and housing in the community, and ultimately become in­de­pen­dent. We have seen the terms for community-­based care change from integration and normalization to empowerment and recovery. Fundamentally, recovery has to do with an improved quality of life, as articulated by Mechanic, McAlpine, and Rochefort (2014, 249): “The goal is to activate the potential of patients to fulfil their own needs, to assume some responsibility for their own lives, and to participate socially in a meaningful way.” Unfortunately, despite vari­ous strategies, PSMH continue to experience stigma related to their illness, have low socioeconomic status, and are generally marginalized in their communities. Far too many are homeless. PSMH face even more insurmountable obstacles than in the early years of community-­ based care; they must continually navigate between their often unstable group living arrangements, the m ­ ental health care system, and therapeutic day programs (Perkins, Ball, Whittington, and Hollings­worth 2012). The ­mental health care “system” is highly fragmented, and the movement ­toward privatization, along with reduced funding, has eroded the public sector (Scheid 2016). In its place, private sector (both nonprofit and for-­profit) agencies have moved to fill the gap, although they continue to rely upon public Medicaid funds (Dobransky 2017). At the same time, employment and in­de­pen­dent living are still central goals for PSMH and their families, as well as ­mental health

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providers, advocates, and policy makers. In this chapter we examine the evolving role of community ­mental health organ­izations in providing opportunities for in­de­pen­dence—in terms of both employment and housing. We draw upon data collected in the early 1990s from a club­house that provided basic skills training as well as supporting employment and transitional employment, and contrast this experience with the programs offered at the Oaks. We then examine the role of case man­ag­ers and peer support personnel and offer an integrated approach to meeting the needs of PSMH.

Assertive Community Treatment The model for community integration is the Program for Assertive Community Treatment (PACT) which was developed at the University of Wisconsin–­ Madison by Ronald Diamond and Mary Anne Test. Estroff (1981) provides a thorough description of the PACT model, and it has been evaluated as very successful (Mechanic, McAlpine, and Rochefort 2014). Developed in the 1970s to meet the goals of community-­based care, PACT models seek to develop (1) vocational and work-­related skills; (2) activities that advance daily living skills; (3) social and recreational activities; and (4) enhanced f­ amily relations, in addition to (5) administering medi­cations and psychotherapy as needed (Estroff 1981, 47). Key to the PACT model is the use of a multidisciplinary treatment team rather than reliance upon a single case man­ag­er model (Gerhart 1990). The first author had firsthand experience of the original PACT model in Madison, Wisconsin, and spent a g­ reat deal of time in each of the five PACT ­houses (where a decentralized approach was favored) as well as interviewing twenty-­four case man­ag­ers in the mid-1990s. The Continuing Care Division (CCD) in Charlotte also followed the PACT model, though ser­vices w ­ ere more centralized. While both PACT programs provided all of the ser­vices to meet the goals identified above, a key focus was on developing work-­related skills, first with the use of sheltered workshops (such as at Goodwill) and then with transitional or supported employment. Currently, both PACT and supported employment are cited as “best” or evidence-­based practices that facilitate recovery, and attention is now placed on their dissemination and implementation (Becker et al. 2011; Watson, Adams, and Jackson 2016). The belief under­lying work-­related skills programs is that work provides a valued social position and status, as well as income. We all want a job, but we also want a job that is meaningful and pays well. In the United States, work is a major life role and an impor­tant source of identity. When asked, “Who are you?,” the response generally is “I am a (job or profession).” Work is also a source of self-­esteem and mastery, and impor­tant not only to our quality of life, but to our m ­ ental health. As reported by Leete (1989, 197), “When one has a chaotic inner existence, the structure of a predictable daily schedule makes life

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easier. . . . ​For me it is work . . . ​a paying job, the ultimate goal. It gives me something to look forward to ­every day and a new skill to learn and improve. As I work I become increasingly self-­confident, and my self-­image is bolstered.” Work gives PSMH a place to go and meet ­people, developing the kinds of tertiary relationships that many lack, as we saw in the last chapter. It is also nice to earn some money, which is an impor­tant source of self-­esteem. On the flip side, work is often stressful, and jobs with low levels of control and autonomy can reduce self-­esteem and mastery (Karasek and Thoerell 1990). Despite the stress related to work, most PSMH want to work. In terms of research, it is the degree of disability rather than the diagnosis associated with severe ­mental health prob­lems that thwarts successful employment. At the same time, stressful working conditions can exacerbate psychiatric disability (Gerhart 1990). While job stressors certainly produce emotional stressors (as we all so well know), PSMH do better when working. The critical barrier to successful employment is the stigma associated with m ­ ental disability. The widely shared and per­sis­tent ste­reo­type is that PSMH are not capable of ­doing most jobs and that tasks must be kept ­simple. Estroff (1981) described the experience of working in a sheltered workshop in the 1970s where she and ­ ere assigned kitchen duties and one day peeled potatoes for the another client w entire shift. She reported that not only she but many other clients felt at best bored by such menial tasks, at worst belittled. PSMH are twice stigmatized by the labels of disability and m ­ ental illness, and are widely viewed as being unpredictable, irrational, slow, stupid, and unreliable (Phelan et  al. 2000). Th ­ ese characteristics are not generally associated with t­ hose of a desirable employee. As pointed out by Link in a series of studies (1982, 1987), PSMH internalize the stigmatized public label, and many do not seek out employment. However, this can be a sign of active coping—­not seeking a job is a good way to protect oneself from the stigmatized responses of employers. In a survey of 117 employers in 1996–1997 to assess compliance with the Americans with Disabilities Act (ADA), the first author (Scheid 2005) found that just over half (52 ­percent) of the employers felt that the limitations imposed by ­mental illness “depended” on the degree or nature of the illness. However, 22 ­percent of employers felt that ­mental illness impinged on an individual’s ability to understand or comprehend work requirements, and 25 ­percent targeted “dangerous” jobs as inappropriate for PSMH. By “dangerous” employers referred to jobs that involved employees operating equipment, including hazardous equipment, or weapons. Estroff noted that she and her co-­workers w ­ ere kept away from sharp utensils. Potential employers ­were also concerned with PSMH being reliable; one employer felt that PSMH “­couldn’t concentrate on work, would easily become stressed, and I ­don’t know how well they could be depended on to come in on time, to be regular.” Suitable jobs w ­ ere low-­level or low-­skill, or, as reported by another employer interviewed, “some repetitive,

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menial l­abor role.” Yet ­these jobs are not likely to lead to economic stability, much less the development of self-­esteem or mastery. We turn next to the experiences of clients in a club­house program, which not only offered job-­related training, but also provided a communal environment designed to enhance activities of daily living as well as social and recreational outlets—­all around a desire to enhance a sense of community among participants.

Club­houses and Day Programs Club­houses and day programs provide PSMH with a home; they are not only a place to go to, but an impor­tant source of both formal and informal social supports. ­These formal programs also seek to enhance concrete skills and empower individuals to live as in­de­pen­dently as pos­si­ble in the community. Scheid (the first author) spent three years (1990–1993) participating in activities at a Community Support Program in Charlotte that provided ser­vices to 200 participants, with an average of 90 in daily attendance at the club­house, or day program, offered by the Community Support Program. The day at the club­house began with many participants walking over from nearby board and care or group homes. Transportation was provided on a volunteer as-­need basis, and often the first author would help transport individuals to the club­house or to vari­ous appointments. Participants would hang around outside, smoking or just “chilling”—­drinking coffee and eating donuts. ­There was a daily chore list for participants to sign up for cleaning, cooking lunch, or skills training. The day started with staff ­going over the daily chore lists, assigning duties as needed, and making plans for after­noon activities (usually a movie or game with a weekly outing). The morning was spent in vari­ous skills training sessions—­some on the computers, ­others in social skills or interactions in groups, still ­others in finding appropriate transitional or supported employment positions. Lunch was cooked by participants, with help as needed from volunteers, and cleanup, which was coordinated by participants. In the after­noon staff went with consumers for job-­related interviews and work supports, while ­those who did not leave ­after lunch would generally watch TV, with a snack around 3 p.m. The program closed around 4 p.m., with many participants hanging around outside before heading back to their residences. The club­house provided transitional as well as supported employment, and of the active members, twenty-­five w ­ ere employed and w ­ ere asked to voluntarily participate in an exploratory study of work experiences (Scheid and Anderson 1995). Data collection was approved by the appropriate Institutional Review Board, and ultimately ten consumers ­were interviewed in depth about their work experiences as well as their illness identity (Estroff 1989) in order to elicit information about their subjective experiences. The sample was representative of the larger population of consumers treated at the Community Support

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Program; the majority (90  ­percent) w ­ ere schizophrenic, African American (70 ­percent), and male (60 ­percent), with most having at least a high school education. Ages ranged from the late twenties to fifty-­six. Megan Smith’s sample of respondents described in chapter 3 is remarkably similar, though older—­ which is to be expected given demographic changes and the aging of the baby boom generation.1 The jobs held by most participants ­were subsidized by ­either supported or transitional employment funds designed to prepare them for more permanent employment. Supportive employment is competitive, with a maximum of twenty hours per week, and provides ongoing job-­related supports. Transitional employment is entry-­level and prepares individuals for ­either supported or full-­ time employment. ­Either way, rehabilitation staff at the club­house worked with both clients and employers as job coaches to ensure that job demands ­were met and that participants received adequate supports. While the jobs ­were menial and part-­time, participants worked in t­ hese positions for several months to over a year, and liked their jobs and the sense of purpose they gave them. All ten participants interviewed ­were grateful to be able to work and have a job (Scheid and Anderson 1995), and they all wanted to continue working, although no one felt confident enough of their capacities to work more than part-­time. Interviews w ­ ere conducted six months ­after an initial in-­depth interview, and seven of the ten participants had the same job, with only two high-­functioning individuals quitting their low-­status jobs in hopes of a better job. The only participant to lose a job suffered from substance abuse prob­lems, a common prob­ lem in securing employment and housing as found by both Dobransky (2014) and Schutt and Goldfinger (2011). Work was a valued social goal and provided a sense of well-­being, as one ­woman reported: “I feel much happier when I work.” Work kept ­people “motivated” or “occupied”; when you are “busy d­ oing ­things it keeps your mind off stress.” Another individual said, “I ­don’t have time to think about my prob­lems when I’m on the job.” Work made every­one feel better—­“productive, like I’ve done something with my time.” At the same time, participants ­were cautious and expressed insight into the constraints of their ­mental health prob­lems on their capacities. A common theme was a recognition of limitations. One Black man reported, “I can do some kind of work, but when I was first sick I ­didn’t think I could do anything at all.” Another individual working at Friendship Trays (which prepares food for delivery to needy individuals) felt “that’s good enough” and had no other aspirations, although jobs at Friendship Trays ­were transitional. While every­one “liked” their jobs, they all complained about the low pay. Many felt that they would never pro­gress beyond the part-­time entry-­level jobs they currently held, although two participants ­were actively looking for a new job. Most hoped “for a job to work for the rest of my life and to make money. . . . ​

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I’ll never get it, I just ­won’t make it.” For half of the participants interviewed, work was viewed as stressful, especially by t­ hose with a demanding supervisor or co-­workers who made them feel stigmatized by their illness. While often stressful, work was not a source of social support or new friends. Instead, as summarized by one consumer, “We just know each other at work, like you get off work and he went his way and I went mine.” Work may not lead to a sense of enhanced community or social integration, and can in fact produce more stress. Instead, PSMH need supportive work environments where the stigma of ­mental disability is minimized. It may be that PSMH need jobs in “non-­ normal” work environments rather than the McJobs associated with sheltered workshops or transitional employment. One occupational therapist at the CCD felt that ­there needed to be more opportunities for volunteer work in the community, as well as work subsidized by county contracts for general maintenance ser­vices, such as mowing the grass or ­house­keeping. She also felt that the club­ house itself could be a source of income-­producing activities, such as serving as a place for other needy individuals to get lunch, or opening a car wash ser­ vice. Th ­ ere is evidence that employment in Chicago’s theater district has been very beneficial for PSMH (Cook 2006), and the Charlotte club­house had good experiences placing participants in jobs at a local costume shop. The interviews also revealed that expressed emotion, a term used to refer to an overstimulating and intrusive environment, was found in many workplaces. Expressed emotion was first associated with the families of PSMH, and referred to criticism, hostility, and emotional overinvolvement (Jenkins and Karno 1992). Expressed emotion occurs when o­ thers seek to shape and control the be­hav­ior of PSMH (Greenley 1986), and ultimately represents a denial of one’s self by a valued other such as a ­family member or employer. Certainly the idea of expressed emotion seems to fit the description of the stressful work environments offered by many participants. Link, Dohrenwend, and Skodol (1986, 256) found that “noisome” job characteristics leading to “intense stimulation” may actually have been a ­factor in the onset of symptoms of schizo­phre­nia. It is notable that onset of schizo­phre­nia often occurs when an individual begins a new role, be that work, college, or military ser­vices. This was certainly true of all ten of the individuals interviewed in the CCD employment program. The impor­tant point is that work in and of itself may not be a welcoming or positive experience, and characteristics of the job and the employer are as impor­tant as the work skills of the individual seeking a job. Another barrier to stable employment is the real­ity of the cyclical nature of severe psychiatric disability. ­There are times when PSMH can work and adhere to a schedule, but t­ here are other times when it is difficult to work due to normal exacerbations of the illness. If found disabled, many PSMH are on Social Security disability (SSI or SSDI), and having a job would reduce or eliminate their benefits and funding for medi­cations and treatment as well as other

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necessary supports such as housing and transportation (Doub, Morrison, and Goodson 2010). Medi­cations may also interfere with an individual’s ability to work. Many of the participants interviewed by Scheid and Anderson (1995) reported that side effects to their medi­cations made them feel “sluggish and weak” and unable to perform well on the job. Psychiatric medi­cations made participants feel “tired; it tires you out real fast.” A young white w ­ oman, college educated, reported that her “biggest prob­lem with finding a job is I’m so slow. I tend to move too slowly for most jobs. To find a job that [I] can be good at, and be slow, that’s hard to find.” Non-­normal, nonstressful, noninvasive, and meaningful activities are needed to achieve the goals of recovery. Accepting the goals of “normalization” may actually contribute to the stigmatization experienced by PSMH, who in fact may need non-­normal environments in which to thrive. We look to the Oaks for evidence of mediating structures that can enable PSMH as well as develop work-­related skills.

Network Activation at the Oaks The Oaks is an example of a spiritual enclave community, and previous research has identified faith communities to be very impor­tant to PSMH (Lincoln and Adams 2016). The Oaks provides not only critical social supports, but also mobilization strategies for integration into new networks (as we saw in the last chapter). We examine the role programs offered to participants at the Oaks that provide opportunities for the activation of new network ties. McConnell and Perry (2016, 121), drawing on the work of Thoits (2011a), refer to this as “network activation.” Participants find that involvement with the vari­ous programs offered by the Oaks not only gives them a place to go and enhanced opportunities for social interaction with other participants, but also provides them with concrete skills and activities. At the Oaks, volunteers drive church vans to surrounding neighborhoods to pick up participants in the morning. On average, about sixty to seventy ­people attend a program day, but not all the same ­people attend ­every day. Vari­ ous staff members greet participants as they exit the vans in the morning. Breakfast and coffee are served between 9 and 10 a.m. Many participants move to the smoking section following breakfast, while o­ thers hang out in the fellowship hall chatting or coloring or sleeping.2 Therapy programs, including art and yoga, and gardening work begin around 10:30, and about two-­thirds of participants engage in ­these programs. At noon, participants start lining up outside the door to the fellowship hall for lunch. Following lunch, participants line up for the vans that take them back to their group homes. According to the recovery program assistant at the Oaks, ­these vari­ous activities and programs teach participants “a lot of dif­f er­ent skills. The gardening situation teaches how

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to work well with one another, how to bring in some income, getting up and being responsible to go to work.” While participants rarely referred to the marginalization they experienced, most ­were excluded from impor­tant social roles, especially from work. Eco­nom­ ically, according to the former vicar, “they are . . . ​segregated by and large from the mainstream economy.” This is ­because they lack an adequate education, exist in the lowest socioeconomic strata, and have few material resources such as adequate clothing, much less housing or transportation. Consequently, most participants did not view employment as a ­viable option. Similar to the beliefs held by participants at the CCD in Charlotte, participants at the Oaks felt that they ­were not “strong enough to work” and that their ­mental illness “[kept] them from working.” Many of ­those who had held jobs would discuss how stressed out they felt, that they just had to quit. The vari­ous programs offered participants a place to go where “they ­don’t have to hide anymore” from “regular, normal p­ eople”—­a place where “­people can be who they are” and not be embarrassed (recovery program assistant). According to the former vicar, the Oaks’ goal is to create a community of belonging. This is an intentional act on the part of the staff, who are sometimes at odds with members of community-­based prevention teams, particularly health care professionals based in the county hospital and department of public health. Charlie, the former vicar, said, “Our model is long-­term community, and if you can fit that by bringing p­ eople . . . ​supporting them as a long-­term member of this community, but if you are just bringing them in so you can bill Medicaid, and d­ on’t care if it is h ­ ere t­ oday or gone tomorrow, you are just disrupting what we are d­ oing.” Critical to community solidarity at the Oaks was close relations between participants and staff. While club­houses and other types of day programs are often professionally staffed with case man­ag­ers and psychosocial rehabilitation counselors, staff at the Oaks often had their own expe­ ental health prob­lems. They w ­ ere generally willing to disclose riences of m their own ­mental health diagnoses, providing an automatic connection between staff and participants. James reported that “one of our administrators has a ­ usic therapist has a diagnosis of m ­ ental illdiagnosis of ­mental illness, our m ness.” This kind of shared experience moved beyond bonding to bridging ties in. It also contributes to stigma re­sis­tance by eliminating the divide between “us and them,” and the pos­si­ble devaluation and discrimination that can occur in many treatment settings. M ­ ental health status disclosure by staff has the potential for role modeling, openness, and breaking down stigma. Joining in communal worship with participants also helped equalize their relationships, eliminating the “us and them” mentality often found in more for­ ental health programs. Staff was a driving ­factor in creating an environmal m ment of equality. How was a sense of equality created? Beginning when

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participants arrived in the morning, staff casually welcomed them in a friendly way, acknowledging them and inviting them to come to the fellowship hall for a cup of coffee. Throughout the day, staff engaged participants and had “real” conversations with them. Friendships developed by simply participating in the same activities. According to the health and wellness director, “I’m always h ­ ere on Wednesday nights and I always . . . ​get to see p­ eople. I mean I’m h ­ ere [during program days] but I used to see p­ eople in that light and they get to see me in that light. And [worshipping] is a dif­f er­ent way of being with somebody. . . . ​ W ­ e’re both, during the Eucharist, . . . ​­we’re both saying the t­ hings that you say, ­there is kind of a connection that ­doesn’t have anything to do with me being staff ’cause I’m not . . . ​a priesty kind of person.” Both religious participation and the experience of m ­ ental health prob­lems created unique relationships between participants and staff. As reported by one participant, “The priest’s ­family has had some very direct impact with ­mental illness. Th ­ ere is not a sense of us and them.” The informal nature of ­these interactions and the disclosure by multiple staff members about their own ­mental health diagnosis naturally led to an environment of equality, a place f­ ree from stigma. Link and Phelan (2001), in their conceptualization of stigma, list the separating of “us” and “them” as a fundamental aspect of stigma. Staff at the Oaks do not foster a community of “us” and “them,” but create a sense of “we”— or solidarity. This was of key importance to the Oaks, which also promoted work-­related skills in their ongoing therapeutic programs. For example, the art director would give advice to a participant as to how to improve her artwork and make it more sellable. This common bond developed into a real friendship. The same art director spoke of her fiftieth birthday party and the presence of one participant who ended up spending the night b­ ecause she had stayed so late to clean up ­after the guests left. Two of the programs at the Oaks ­were income-­producing for participants: gardening and art therapy. According to James, a former staff member, gardening in par­tic­u­lar has monetary advantages: “A lot of the gardeners prob­ably make between 60 and 80 dollars a month, which by f­ ree market standards is not a lot of money at all, but if you only get 700 dollars a month in Social Security and y­ ou’re paying 650 of that to [a] personal care home, with r­ eally subpar accommodations, the difference between all that you have left was 650 of 700, that 50 dollars plus another 80 all the sudden makes [a] big, big difference, access ­ ouse.” ­There to recreation, [and] opportunities to do something outside the h ­were other opportunities to earn income. ­Will does janitorial work: “I wipe down ­tables . . . ​I sweep and mop the floor . . . ​I stand the chairs on top of the ­tables . . . ​I . . . ​take out the trash.” Alex, a participant turned staff member, has become the center-­certified nursing assistant at the Oaks. He originally arrived at the center resulting from a court order to attend a day program ­a fter an incident involving vio­lence against his ­mother. He began telling the staff

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members about his former occupation. “They thought I was delusional saying that I was a nurse; come to find out I was [a nurse]. Yeah, it was an experiment [to practice nursing at the center] and I volunteered for a year ­doing what I do now . . . ​[and] I basically built the program from the ground up over ­there.” Clearly, the Oaks served to both develop and enhance capacities and enabled participants to find meaningful social roles and even jobs. However, a major barrier to work for many PSMH is having a stable place to live. You need an address to even apply for a job (although cell phones may be replacing a physical address), and you certainly need a place to get ready for work.

In­de­pen­dent Living Critical to community integration and recovery is housing. Having a place to live provides every­one with sense of community and social ties as well as a valued source of identity. Schutt and Goldfinger (2011) describe the vari­ous efforts to provide housing to ­those with serious ­mental illnesses, beginning with deinstitutionalization and the development of community m ­ ental health centers, which occurred at the same time as economic recessions and the historic development of housing shortages and/or a lack of affordable housing. Much was written during the 1980s and 1990s about homelessness (the reader is directed to James Wright’s excellent account, Address Unknown: The Homeless in Amer­i­ca [1989]), and debates over w ­ hether the source of the homelessness was substance abuse, ­mental illness, or simply a refusal to accept the rules of the shelters that provided somewhere to spend the night. While m ­ ental illness was not the cause of homelessness (Snow et al. 1986), housing was recognized to be a formidable barrier to community integration and recovery, and the provision of housing certificates was a central (and successful) component of the RWJ Program on Chronic M ­ ental Illness (see chapter 2). Housing remains a central concern, and funding for low-­income housing is even more precarious than it was in the 1980s. Formal programs for supported housing exist, and are built around the idea that PSMH should have some choice about where to live and a recognition that they ­will need supports and ser­vices to continue to live in­de­pen­dently. However, a prob­lem has been that ­mental health providers w ­ ill make a recommendation for housing based upon their perception of an individual’s ability to function in a given environment— be that an in­de­pen­dent apartment, a group home, a board and care home, or a shelter. Space at all of t­ hese housing options is l­ imited, and referrals from a social worker or case man­ag­er are essential to placement. PSMH have a strong preference for in­de­pen­dent living, while m ­ ental health providers have often deemed group homes to be more appropriate. Schutt and Goldfinger (2011), in a complex experimental design of vari­ous housing alternatives, found that group homes had more positive outcomes for residents, but ­under the condition that

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residents had some control of rules governing be­hav­ior. ­Every one of us desires to live in a place where we have some choice about who we live with and how we w ­ ill live. A major issue is the co-­occurrence of ­mental health prob­lems and substance abuse, and many housing supports and shelters operate ­under firm rules governing substance use, referred to as Treatment First. Individuals have to comply with treatment recommendations related to substance use, medi­cation compliance, employment, or engagement in skills-­based programs in order to obtain housing. An alternative, Housing First, was developed in the early 1990s to provide individuals with access to long-­term housing without ser­vice requirements. Now viewed as an evidence based practice, Housing First is widely established in many communities and has been found to be successful in providing a supportive environment with increased attention to how vari­ous programs are implemented (Watson, Adams, and Jackson 2016; Watson, Wagner, and Rivers 2013). Funding shortages for housing programs and system fragmentation remain as barriers to providing adequate housing supports. In lieu of governmental supports, many faith-­based organ­izations have stepped in to provide for the homeless, especially in large urban cities (Adkins, Occhipinti, and Hefferan 2010). As described in chapter 3, what has since become the Oaks was initially a response to the need to h ­ ouse the homeless in Atlanta. The Oaks continues to work to improve the living situations of its participants, recognizing how impor­tant dependable housing is to stability. Most participants attending the Oaks lived in unlicensed personal care homes in the area surrounding the center, similar to the living conditions of ­those at the CCD in Charlotte, North Carolina. A common theme among participants at both centers was the desire to eventually live in­de­pen­dently. For most, this ­will never be a real­ity, but the Oaks provided opportunities to improve living arrangements without the bureaucratic hassles formal ser­vice providers often face (Dobransky 2014). An example of improved living conditions is illustrated by a participant at the Oaks who talked to a staff member about changing his personal care home to one that granted him more freedom and in­de­pen­dence during the day. He talked to the staff member about his circumstances, and then called the new ­ fter receiving satisfacpersonal care home man­ag­er to talk about moving in. A tory answers about the details of the living conditions at the h ­ ouse, he chose to pack up his meager belongings and move. L ­ ater, he described a typical day, which included roaming the new neighborhood before stopping at Starbucks for a cup of w ­ ater. He relished his opportunity to choose how to spend his day, a choice not previously available to him. A c­ ouple of participants had graduated from personal care homes to more in­de­pen­dent settings in moves that ­were facilitated by staff and volunteers. Through involvement in the program and engagement with other staff members, participants ­were able to find improved

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living situations via licensed personal care homes, living with fewer roommates, and, for a small few, in­de­pen­dent living. Impor­tant to the social supports offered at the Oaks was that many of the staff w ­ ere themselves PSMH, and they offer peer support, which is a critical component of many recovery programs. We turn next to a consideration of the role played by professional trained m ­ ental health providers, specifically case man­ag­ers, and peers.

Professional and Peer Social Supports ­ ere is a wide diversity of workers who provide m Th ­ ental health care in community-­based ­mental health care organ­izations (Dobransky 2017), and relatively few of t­ hese individuals are psychiatrists. Instead, ­mental health providers typically provide case management ser­vices to PSMH. Case management may be performed by any ­mental health professional, including a nurse, social worker, psychologist, or counselor. While some universities offer specialized tracks or degrees in case management, generally a master’s degree in some social welfare field is all that is necessary for employment. Certified Community Support Programs require that case man­ag­ers have a master’s degree as well as experience working with individuals with m ­ ental illnesses, and Medicaid reimbursement for case management also requires a gradu­ate degree. While case management may seem to be less emotionally demanding than therapy, case man­ag­ers are intimately connected to their clients ­because they provide emotional supports as well as assistance with the many demands of living in the community (Scheid 2004). However, case management is often not deemed as professionally challenging or rewarding as therapy. When case management models ­were first developed in the 1980s, social work students showed ­little interest in e­ ither working with t­ hose with chronic and severe m ­ ental illnesses or in case management. This no doubt reflects the wider cultural belief that medical care and therapy can lead to cure, whereas the ser­vices offered by a case man­ag­er focus upon rehabilitation and improved levels of functioning. Furthermore, reimbursement for social supports is ­limited, and case man­ag­ers are generally not well compensated for their work. In addition, case man­ag­ers are often over­burdened by the demands of their clients and the endless paperwork required by their agencies. Community ­mental health organ­izations are extremely busy places, with clients always pre­ sent and case man­ag­ers constantly on the go. The phones never stop ringing, and the days go by quickly with countless meetings with treatment teams, staff and supervisors, clients and their families, and the Department of Social Ser­ vices, and ­running around in the community to develop the tangible supports (i.e., transportation, housing, employment) for clients to live in the community. Complicating the “typical” day are the constant ongoing crises with clients, including suicide attempts, emergency hospitalization, arrests, and cases

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of drug overdoses. More normal prob­lems with daily living are also experienced as crises by many clients, including conflict with landlords, other clients, or ­family members (Scheid 2004). Many participants at the CCD lived at a nearby boarding­house, and ­there w ­ ere frequent altercations, ranging from fights between clients to rape. Clients in in­de­pen­dent living arrangements needed even more supports. One case man­ag­er interviewed by the first author recalled having to repeatedly go to an apartment to show a client how to turn on the stove. Case man­ag­ers help their clients to “live, just live,” and that takes a g­ reat deal of time, understanding, and patience. Dobransky (2019) found that m ­ ental health providers also play an impor­tant role in helping their clients manage the stigma of m ­ ental illness. In order to deal with the demands of high caseloads, case man­ag­ers often operate in teams, with four or five case man­ag­ers sharing caseloads of anywhere from ten to thirty-­five clients each. Case man­ag­ers have supervisors who are generally case man­ag­ers or ­mental health professionals themselves. While case man­ag­ers have a ­great deal of flexibility in their work, ­there is still a high degree of bureaucratic control. Funding sources (especially Medicaid) require extensive documentation of the work done by a case man­ag­er in order to verify that ser­vices rendered are indeed worthy of reimbursement (Dobransky 2014). With the growth in managed care (since the 1990s in the United States), the work of case man­ag­ers has been subject to even more bureaucratic control and scrutiny (Scheid 2004). The role of case man­ag­ers changed from linking clients to needed ser­vices (thereby improving access and coordination of care) and advocating for their clients to keeping costs down in the face of managed care constraints. Furthermore, managed care only reimburses ­those ser­vices with scientific evidence of clinical efficacy—­favoring medi­cations over both therapy and case management. While case management, supported employment, and peer supports have also been recognized as “best practices” as evidence of their efficacy has been verified by research (Watson, Adams, and Jackson 2016), implementation and institutional support remain problematic in the face of continued resource constraints. The hard job of case management keeps getting harder. Recent modifications of Medicaid case management have tightened the definitions of what constitutes case management and who may do case management, reflecting an increasing preference for medical care and a de-­emphasis on supportive ser­vices. Case management must enhance cost-­effectiveness—­even in the case of chronic illnesses. For example, in 2010 the North Carolina Division of Medical Assistance ­limited case management ser­vices to three hours per client each month, and also required submission of a weekly assessment form with a discharge plan. The expectation that case management should be short-­term and goal-­oriented clearly runs ­counter to the long-­term supports needed by many PSMH. Limitations on the case management role pre­sents a clear dilemma, as noted by Dill

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(2001, 100): “What is problematic for case man­ag­ers is to provide support without creating de­pen­den­cy; to nurture hope when the client may never leave the system of care.” Myers (2015, 93) succinctly describes the case man­ag­er’s dilemma: “Is recovery ­really abandonment?” Early proponents of empowerment models ­were often critical of professional case man­ag­ers, pointing to the power difference where providers w ­ ere the experts and consumers w ­ ere the patients who w ­ ere expected to comply with treatment recommendations. Estroff (1981) also details conflict between staff and clients in her ethnography, and Dobransky (2014) describes status differences between providers and their clients. Part of the critique of professional power certainly arose from providers’ focus on medi­cation compliance and the use of ­legal means to force patients to take their medi­cation in the community, which would then grant them access to housing or other types of supports. Empowerment was seen as client self-­determination, and peer supports ­were part of the pro­cess of having consumers take charge of their own treatment (Neugeboren 1999). Peer support programs typically serve t­ hose whose needs are not met by traditional ser­vice agencies and provide helpful relationships that can enhance ­mental health. Peer support is not therapy; rather, peers help consumers meet practical prob­lems of living, share knowledge, and are available when needed. Peer support programs work by helping consumers meet basic needs (instrumental support), socio-­emotional support (providing a sense of belonging or friendship), or enhancing recreational skills and thus promoting community integration. Prosumers can augment case management and lower the workload and emotional demands experienced by case man­ag­ers. Peer support also enhances problem-­solving strategies and can lead to higher levels of empowerment and recovery (Clay et al. 2005). However, recovery is ambiguous and contains a fundamental contradiction between self-­determination and a client’s need for ongoing supportive ser­vices. Dobransky (2014) makes an impor­tant distinction between internal versus external communities. Internal communities are ­those offered by club­houses or programs such as ­those at the Oaks, while external (or natu­ral) communities are ­those in the community, such as workplaces or the social environment envisioned by the goals of normalization and recovery. Many PSMH prefer the more inclusive environment where they are accepted as opposed to the isolation and marginalization experienced in the outside world. Participants in Myers’s (2015) ethnography of a peer-­oriented recovery program viewed it as a “haven in ­here versus out ­there. . . . ​I n ­here, eventually felt . . . ​much safer, kinder, quieter, gentler, healthier, and more tolerant than out ­there” (49). While peer supports are now seen as an impor­tant component of recovery that can promote the empowerment of PSMH, the use of peer supports also meets the goal of containing costs, as peers are less expensive than professional ­mental health providers. Dobransky (2014) refers to peer support personnel as

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prosumers and describes how in contrast to mostly white young w ­ omen with professional credentials, prosumers w ­ ere more likely to be male, older, and Black. Prosumers lacked institutional supports, and Myers (2015) points to the stress experienced by peers in the face of constant bureaucratic demands (for example, to document the time they spend with a consumer in fifteen-­minute time blocks) and funding cuts. While empowerment can enable PSMH, both case man­ag­ers and prosumers also need to be empowered by the systems within which they work. Ultimately, m ­ ental health providers, prosumers, and clients need to be active partners in decisions about care and need to work together to advocate for improved systems of care with involvement in organ­izations such as NAMI. Treatment teams should also involve consumer advisory groups, who need to be actively involved in all levels of decision making by agencies providing ser­vices to PSMH. Providers as well as PSMH need to empower each other and recognize that neither is the “prob­lem” but that inadequate system-­level supports, financial constraints, and widespread social stigma all undercut the goals of community integration. However, the ­mental health care system ­faces a major crisis: the looming shortage of providers and ­mental health workers.

Workforce Issues Critical to the formal supports provided by ­mental health programs are the ­people who work in t­ hose programs. Yet, we are in the midst of a growing shortage of ­mental health care providers. In analyzing the ­mental health workforce, Morris and Lezak (2010, 105) conclude that “at a time of growing demands to transform m ­ ental health systems by d­ oing more and d­ oing it better, t­ here are not enough ­mental health professionals to do it, period, and the shortages are likely to get worse in the near term.” ­Mental health care is distinct from the more general crisis on shortages in health care workers due to the diversity of dif­fer­ent professions and disciplines that provide m ­ ental health care (Morris and Lezak 2010). While social work and psy­chol­ogy are prob­ably the most prevalent sources of training for ­mental health care, nurses and public health workers are also likely to be found serving as case man­ag­ers or m ­ ental health counselors. The Department of Health and ­Human Ser­vices reported to Congress in 2013 that 77 ­percent of U.S. counties had a severe shortage of ­mental health workers, with 55 ­percent of counties (all rural) having no m ­ ental health professionals (Gordon 2018, 358). Another prob­lem is that many ­mental health professionals do not accept private health insurance, much less Medicaid, further exacerbating prob­lems with access to ­mental health care. Access to psychiatrists is especially daunting (Gordon 2018), and both authors have witnessed firsthand the prob­lems their friends and loved ones have had trying to find a ­mental health provider and to pay for necessary ser­vices.

Us and Them • 83

Case man­ag­ers play a critical role in providing for community integration, yet t­ here is wide variability in the training they received (Dill 2001). Case man­ ag­ers are not well compensated and suffer high rates of job-­related stress and burnout. Dobransky (2014), Myers (2015), and Scheid (2004) all provide detailed descriptions of the many prob­lems faced by m ­ ental health providers as they strug­gle to empower their clients and advance the goals of recovery. Case man­ag­ers and their clients are also aging, compounding prob­lems with the need for long-­term integrated ­mental and physical health care. One solution, discussed above, is the increased use of peers as members of supportive m ­ ental health teams. However, peers must be trained and credentialed in order for their ser­vices to be reimbursed. M ­ ental Health Amer­i­ca has been active in promoting peer support development and offered a webinar in June 2020 to promote workforce development of peers. ­There is a National Association of Peer Supporters who are also promoting increased use of peers to address workforce prob­lems. At the same time, while prosumers (i.e., peer supports) can help alleviate some of the burden of case man­ag­ers, they also face similar bureaucratic constraints as well as burnout and stress due to the emotional l­ abor of providing care, and peers themselves are disempowered and stigmatized by their ­ ental health prob­lems. Reimbursement is an impor­tant experience with m consideration as well; prosumers should not be exploited to provide a source of cheap ­labor in a resource-­poor environment. Cross-­training is one way to bring PSMH, peers, advocates, volunteers, and providers together, providing for needed supports at both the formal and informal levels, as well as opportunities for advocacy and efforts to change the system of care. Cross-­training workshops and modules involve educators, providers, consumers, and volunteers in interactive trainings with objectives and outcomes determined in advance by collaborative teams who work to develop the curriculum. Cross-­trainings use materials developed by national agencies such as the Substance Abuse and ­Mental Health Ser­vices Administration (SAMSHA) as well as local community expertise (and the experience of consumers is a critical form of expertise) to develop educational opportunities to identify and solve community gaps in ser­vices. ­Every community is dif­f er­ent, and the types of ser­vices that can enhance recovery vary widely. Driven by local contexts, cross-­trainings can both enable and empower by enhancing participation. The first author, along with community collaborators, has developed a curriculum for cross-­training than can be found in Scheid 2015. ­There is no one right template for cross-­training, just as ­there is no one template for recovery. Instead, cross-­training can assist providers and consumers to develop new types of solutions in order to enhance both resources and recovery. Cross-­training enables both participants and the larger community and is an impor­tant mechanism in developing a collaborative community system of ­mental health care. The

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Affordable Care Act included provisions for training and increased funding, and supports for both ­mental health and cross-­training should be a national priority. Fi­nally, a critical role for both professional and peer providers is helping PSMH deal with the stigma of m ­ ental illness. Stigma exists at all levels—­within the individual, in the reactions of t­ hose around the individual, in widely held views or public stigma, and in the social institutions within which we all live and work. Dobransky (2019) documents the activities of ­mental health providers as they work with clients to manage the stigma of ­mental illness. He found that providers worked with their clients to both “normalize” stigma by helping them decide when (and to whom) to disclose their status, and to “buffer” their clients from the negative reactions of o­ thers. Providers and peer counselors served as key network members, and as teammates in the pro­cess of stigma management. Stigma is a significant barrier to community integration, housing, and employment, and efforts to reduce stigma w ­ ill go a long way t­ oward promoting the goals of recovery.

Discussion Critical to recovery are fulfilling roles and a degree of in­de­pen­dent living. Housing and employment are the linchpins upon which community integration depends. Both provide for ontological security (Laing 1960, 965), which is merely the sense that life is okay. Housing provides a stable environment and a degree of control over life, while employment provides the income to support in­de­pen­dent housing choices. Both allow for continuity, which is so impor­tant to ­those who have had to wake up dealing with ­either confinement (i.e., due to involuntary commitment) or strug­g le to get to the end of the day (having enough food or dealing with suicidal ideation). To achieve a sense of security, PSMH need to have not only the meaningful roles that accompany any job, but the income to achieve the goals of in­de­pen­dent living. Work is impor­tant— it provides a valued social position and role identity; it marks “who we are” and is critical to self-­identity, self-­esteem, and well-­being. Work is the ave­nue to not only income and health insurance, but to other network ties and both perceived and tangible supports; it is a critical source of enablement. Even the most menial jobs provide something to do, somewhere to go, and interactions with ­others—as well as a l­ittle pocket change. From the now classic study by Rosenfield (1992) we know that while the vocational rehabilitation offered by club­houses did not necessarily result in a job, participants experienced a higher overall quality of life by merely having someplace to go. As described by Myers (2015, 26), “In the absence of work, many members spent most of their day at the center.” At the same time, work is a major source of stress and can reduce opportunities for autonomy, control, and self -­development. As we saw

Us and Them • 85

in this chapter, data collected from participants demonstrates that the jobs deemed appropriate for PSMH are not only low-­paying and low status; they are also highly stressful and may expose PSMH to intense emotional demands that can undercut all the gains made pos­si­ble via employment. ­These prob­lems extend to prosumers, who may be easily exploited by a market-­driven health care system. Employment and in­de­pen­dence are stressful, and ­there is a case to be made for the provision of supportive, nonstressful, welcoming environments for PSMH.3 The Oaks clearly fulfilled that role for many of its participants. The key finding of the ethnography of the Oaks is that ­people need a place to call home where they are not only accepted, but have the opportunity to develop their innate skills and abilities. The Oaks provided for ontological security. Some participants feel enabled when they can talk about their lived experiences and educate o­ thers about ­mental illness. This sharing of stories helps participants build rapport with ­others and helps remove some of the self-­stigma as well as serving as a path to reducing social stigma. Enabled with a strong voice and an expertise in a subject area (lived experiences), participants muster the courage to talk openly about their personal situations. Jack said: “Schizo­phre­ nia and stuff like that. . . . ​[Many ­people] d­ on’t understand ­mental illness. ­You’ve got to tell them.” He also believed that sharing his story with o­ thers contributed to “making good friends. I started having good friends.” Prosumers can be a critical resource for educating not only consumers, but the larger public, about the real­ity of living with a serious m ­ ental illness. As we saw in the last chapter, the bridging connections to NAMI groups also fostered empowerment by linking participants to ties outside of the Oaks and to efforts to improve ­mental health care and reduce stigma. In the next chapter we turn to the role of community advocacy, and investigate vari­ous advocacy efforts as well as federal and state legislative initiatives to reform the ­mental health care system.

6

­Going Backward Are We Doomed to Repeat the Failures of the Past? In this chapter we move to the macro level of the Wholistic Framework for Community Enablement (see figure 1.1) and consider the meaning of overarching structural supports for community integration, focusing on the role of ­mental health advocacy and policy making. We consider vari­ous federal initiatives to improve (or dismantle) ­mental health care, and then move to the state level, where we utilize data collected on 2013 m ­ ental health reform efforts in all fifty states. This data provides an impor­tant context for policy making as we compare efforts across states to improve care for ­people with serious ­mental health prob­lems (PSMH). Are reform efforts directed ­toward improvements in community care, or ­toward inpatient care and crisis management? ­Toward civil rights and stigma reduction, or ­toward the criminal justice system? Are ­there efforts to enhance workforce capacity, or are efforts directed ­toward reductions in ser­vices? In our analy­sis of state reform initiatives we also consider the role of state-­level indicators of economic, po­liti­cal, and ­mental health conditions. We then turn to a more in-­depth analy­sis of reform efforts in two states—­ contrasting Wisconsin’s emphasis on recovery and consumer involvement with North Carolina’s focus on privatization and bureaucratic oversight. This comparison of two states provides insight into how competing priorities for ­mental health reform can result in system-­level fragmentation and disarray.

86

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­Mental Health Reform and the Law When we think about efforts to reform existing conditions we turn to the law and social policy efforts. Laws establish moral standards for social policy, and also serve as the watchdog for social policies (Stone 1975). Public policy is in part driven by the identification of a prob­lem that needs to be solved, and with re­spect to m ­ ental health, t­ here has been l­ ittle consensus over what exactly the prob­lem is. Should m ­ ental health laws protect society from harm inflicted by individuals with ­mental disorders, or should laws protect the interests and rights of ­those potentially dangerous individuals? The conflict between t­ hese two purposes of m ­ ental health laws is long-­standing, and continues to be a source of both public and scholarly debate (Miller and Hanson 2016). Alan Stone (1975, 17) referred to the “law–­mental health system as particularly laden with Kafkaesque conundrums” and clearly articulated that while dangerousness was the only legitimate basis for involuntary commitment of any kind, violent be­hav­ior cannot be predicted and is as much a product of social context as is personality. Since Stone’s early critique of the dangerousness standard, civil commitment has been extended to include “severe disablement” as a justification for outpatient commitment, but disablement is an even more ambiguous standard to determine than is dangerousness. The last time t­ here was consensus on m ­ ental health care, it resulted in passage of the Community ­Mental Health Care Act of 1963, which established a  clear federal mandate for community-­based care. However, as we have shown in previous chapters, this mandate was never adequately funded, and community-­based care can be seen as a failure in its own right—­not just as a failure of deinstitutionalization. Since 1963 t­ here have been a number of federal initiatives, including the 1999 ­Mental Health: A Report of the Surgeon General, the 2003 Presidential Commission on M ­ ental Health, the Americans with Disabilities Act (passed in 1990 and amended in 2008), the ­Mental Health Parity and Addiction Act (2008), and the Affordable Care Act, or ACA (2010). However, none of t­ hese federal policies has had much impact on ­mental health care, leading Mechanic, McAlpine, and Rochefort (2014, 65) to conclude that “consumers of ­mental health care have benefitted from many systematic changes that occurred over time, including the diversification of ser­ vice options, improved tolerance and re­spect for the rights of ­those impaired by ­mental disorders, and greater public visibility of the treatments delivered in dif­fer­ent settings. . . . ​However, an unfortunate consequence of the elabora­ ental health system has been to make it increasingly disor­ tion of the nation’s m ga­nized and unmanageable.” ­Mental health care is also s­ haped by state and local initiatives. A leading ­mental health policy scholar, David Rochefort (1999), provides a good overview

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of the politics of ­mental health in the context of what he refers to as the intergovernmental system—­the interplay of federal, state, and local governments. Historically, local governments w ­ ere dominant when most m ­ ental health care occurred in p­ eople’s homes and local communities. States had (and still have) control over institutional care and large state institutions or asylums. As we have seen, the 1963 Community ­Mental Health Centers Act gave the federal government a greater role over m ­ ental health care. However, Medicaid (as opposed to Medicare) was set up as a state program and was totally voluntary, with states having a ­g reat deal of leeway in determining which populations or ser­vices would be reimbursed. As a consequence, ­mental health policy is framed at the state level, resulting in fifty dif­fer­ent ­mental health care policies and systems with wide variation between states (Rochefort 1999; Wolff 2002), which we ­will examine more closely in the following section. It is impor­tant to understand that Medicaid is a joint federal-­state policy, with the federal government establishing mandatory ser­vices and states having leeway via optional add-on ser­vices, or with the use of waivers that allow for exemptions from certain national standards. Consequently, shifts in control between the federal and state levels are very impor­tant to understanding the availability of ­mental health care. The 1982 Omnibus Reconciliation Act and its block-­granting of federal support to the states not only reduced federal spending for ­mental health ser­vices; it diminished the role of the National Institute of ­Mental Health. However, more resources ­were diverted to ­those with serious m ­ ental health prob­lems with the establishment of Community Support Programs (see chapter 2 for a review of ­these issues). At the root of the interplay between federal and state m ­ ental health policy and funding is the real­ity that m ­ ental health care is costly, treatment is ambiguous, and outcomes are uncertain; consequently, as more than one case man­ag­er has reported to the first author, “nobody wants our clients.” Rochefort (1999, 476) refers to the avoidance of costly or risky ­mental health policy as a “hot potato” or a “tug of war” between federal and state governments. Medicaid is still the major source of financial support for ­mental health care, not only in terms of spending, but in authorization for some ser­vices as opposed to o­ thers. Medicaid expansion associated with the ACA was designed to provide more resources to states to provide ­mental health ser­vices to the uninsured. Current debates over Medicaid and provisions of the Affordable Care Act are critical to the f­ uture of m ­ ental health care. Universal insurance w ­ ill ­favor t­ hose with serious m ­ ental health prob­lems who lack resources, while a private insurance system w ­ ill f­ avor t­ hose with the resources to purchase m ­ ental health care. Given the real­ity of wide state variability in the expansion of Medicaid u­ nder the ACA, as well as in ­mental health policy and care, we turn next to a closer examination of the realities of state-­level m ­ ental health reforms.

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State-­Level ­Mental Health Reform Initiatives: A Snapshot Impor­tant to understanding m ­ ental health policy are the priorities and values (i.e., normative standards) by which we can evaluate alternative systems of care and reform efforts. ­These normative criteria provide benchmarks by which we can assess policy efforts and identify areas in need of improvement. Mechanic, McAlpine, and Rochefort (2014, 330) use NAMI’s 2009 report Grading the States (NAMI 2009) as an illustration of normative analy­sis, and argue that while the NAMI reports may not meet strict standards of scientific research, they are impor­tant to ongoing discussion of policy issues by “formulating transparent standards for assessment, gathering timely and original information pertinent to ­these standards, and packaging the results in a way suitable for understanding by a diverse group of officials, experts, members of the media, and, not least, users of the system.” In 2009 NAMI gave the United States an overall grade of D and evaluated the system as “in crisis,” with no state receiving an A, most states receiving a D, and six states receiving an F. Minnesota got a grade of C, although NAMI described Minnesota as a state “working hard to chart a course for reform.” We also utilize NAMI’s data on state level legislation and augment it with data collected by Mental Health America (MHA) and other state-­level indicators to understand what kinds of legislation states have passed as well as what state-­level f­ actors are associated with the passage of dif­fer­ent types of legislation. Rather than using the term “normative criteria,” we can simply refer to the themes analyzed by NAMI as per­for­mance goals. Assessment of each per­for­mance goal is based upon a series of specific mea­sure­ments related to the availability of ser­vices, patient outcomes, planning, and financing. Data are collected from state m ­ ental health authorities and documents, as well as from surveys of consumers and their families. We begin with NAMI’s State Legislation Report 2013, published the first year NAMI began providing an annual report on state legislation. In 2013 ­mental health became an impor­tant policy ­ ental Health Parity and Addicpriority for a variety of reasons. The 2008 M tion Equity Act (MHPAEA) and the 2010 ACA ­were implemented. Both federal laws have the impor­tant consequences of expanding demand for ­mental health ser­vices, as does the provision of the ACA to expand Medicaid to the uninsured. In response to the rising demand for ser­vices, and with recovery from the recession, all but six states (North Carolina, Maine, Louisiana, Nebraska, Wyoming, and Alaska) maintained or increased their ­mental health bud­gets (NAMI 2013). The Newtown tragedy (December 2012), where twenty ­children and six adults w ­ ere fatally shot at Sandy Hook Elementary School in Connecticut, also provided a trigger event that stimulated public outcry for systematic ­mental health reforms. In response, the White House issued a report

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recommending background check systems for gun owner­ship, increased school safety, and increased access to m ­ ental health ser­vices (White House 2013). We first examine legislation in terms of meeting the 2013 per­for­mance goals on which NAMI collected data. As noted above, assessment of each per­for­ mance goal includes a wide variety of specific mea­sures, described below. ­ ental health system ­Mental Health System Improvements: Any kind of m improvement, including reorganizations and system monitoring, ­mental health parity, insurance legislation, school ­mental health training and ser­vices, m ­ ental health reporting for gun owner­ship. Crisis and Inpatient Care: Civil commitment (both inpatient and outpatient), crisis response ser­vices, suicide prevention, policies associated with public m ­ ental health facilities. ­ amily involvement in care, health informaCommunity ­Mental Health: F tion privacy, prescription medi­cations, provider credentials, standards of care, provision of supports for employment and housing, telehealth, or technology. Criminal Justice and M ­ ental Health: Procedures for law enforcement ­ ental illness, court when dealing with individuals displaying signs of m treatment of defendants with ­mental illness, issues related to incarceration of individuals with ­mental illness as well as release, probation, and parole reform. Civil Rights and Stigma Reduction: Aims to protect the rights as well as to reduce the stigmatization of individuals living with m ­ ental illness. A total of 185 legislative bills w ­ ere passed in 2013 at the state level, with only 4 states not passing legislation (Illinois, Maine, Michigan, and Vermont). Of initial interest is the variability in the number of bills passed (see figure 6.1). While twenty states passed only one or two bills, thirteen states passed three, four, or five bills, and another thirteen states passed more than five bills. The states with the highest number of bills are scattered throughout the county—­ Louisiana passed nine bills; both Texas and Washington passed ten bills; and Minnesota passed eleven (we ­will return to this ­later, as Minnesota was ranked top by Mental Health America). In terms of the central theme covered by ­these bills, relatively few bills w ­ ere passed that dealt with civil rights or stigma reduction. Only seven states passed such legislation: Delaware, Indiana, New Jersey, North Dakota, Oklahoma, ­Virginia, and West V ­ irginia—­once again, with no apparent pattern. The greatest number of bills passed focused on crisis or inpatient care (N = 59), followed closely by community ­mental health (N = 53). Systems improvement accounted for thirty-­n ine of the bills, and criminal justice / ­mental health legislation for thirty-­t wo of the bills. It is noteworthy that states passing more bills for system improvement and crisis/

3

2

2

6

9

5

1

2

8

FIG. 6.1   Number of Legislative Bills Passed in 2013

1

4

10

10

4

4

7

2

2

5

11

4

9

6

3

1

3

0

United States of America

3

7

5

0

2

1

2

2

1

2

5

6

1

2

4

2

2 0 6

3

More than 5 bills passed

3 to 5 bills passed

1 to 2 bills passed

0 bills passed

Number of bills passed

2

0

3

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inpatient care w ­ ere also more likely to pass bills focused on community m ­ ental health. We examined the relationship between the number of bills within each per­ for­mance goal that passed and vari­ous state-­level conditions in order to determine if ­there ­were any patterns to be found that could guide further advocacy work. Our analy­sis was guided in part by previous research on ­factors that influenced ­whether or not states had a­ dopted m ­ ental health parity laws (Hernandez and Uggen 2012). While m ­ ental health advocates focused on the federal parity legislation, many states passed parity legislation in advance of the MHPAEA of 2008. By 2005, five states had passed comprehensive parity legislation, six had passed comprehensive parity legislation with some limitations, and twenty-­seven states had passed l­ imited parity laws that w ­ ere restricted to select populations; only twelve states had not passed parity legislation. Hernandez and Uggen (2012) found that economic f­ actors, a liberal state government, and the influence of NAMI advocacy groups ­were impor­tant f­ actors influencing the passage of more comprehensive state-­level m ­ ental health legislation. We w ­ ere curious as to ­whether we could discern any patterns in the passage ­ ental health legislation. In addition to the NAMI state-­level of other types of m data, we collected data on state-­level economic conditions, including the percentage of the population living in poverty and per capital state spending. We also examined ­whether the state had expanded Medicaid, and ­whether or not they had increased their m ­ ental health bud­gets (comparing the 2013 and the proposed 2014 bud­gets), and the change in the number of clients served by state psychiatric hospitals between 2007 and 2013. Additionally, we considered t­ hose po­liti­cal characteristics Hernandez and Uggen (2012) found to be significant: the percentage of the population self-­identified as Demo­cratic, the party affiliation of the state’s governor’s party, and the number of NAMI affiliates. Preliminary analy­sis points to a ­great deal of state variability, with few consistent patterns. We could not find any significant relationships between our state-­level indicators except the well-­known fact that states that had expanded Medicaid also had a higher percentage of the population who identified themselves as Demo­crats or leaning Demo­cratic according to a 2013 Gallup poll. Since we could not find any overall statewide patterns in the passage of the number of bills by each state, we undertook a more detailed analy­sis of the individual mea­sures that NAMI used to constitute the five per­for­mance goals. The 2013 NAMI report provides state-­by-­state information on what legislation was passed, taking note of positive legislation and flagging legislation with an overall negative impact on m ­ ental health care. Given the focus of this book on community integration and stigma, we examine the legislation that provided additional supports for employment and housing and t­ hose that sought to reduce stigmatization as well as legislation dealing with peer supports.

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­There was only one bill dealing with housing, in North Carolina, and this bill was in response to a Department of Justice ruling that North Carolina had ­violated least-­restrictive mandates in their use of adult care homes. The state legislation provided short-­term assistance and increased funding to the m ­ ental health bud­get to help the North Carolina m ­ ental health system move individuals from large group homes to more in­de­pen­dent living arrangements. This is hardly a proactive piece of legislation, and we ­will return to the situation in North Carolina l­ ater in this chapter. Minnesota passed a bill to strengthen and extend funding for supported employment as well as legislation in support of ­family peer specialists by allowing Medicaid funding to be used for reimbursement for ­these ser­vices. Oklahoma passed a bill allowing for the certification of peer recovery specialists who are employed by a behavioral sciences provider. In terms of civil rights advocacy, the 2013 NAMI report found this to be an under­lying theme in most legislative efforts, but very few bills specifically advanced civil rights. Oklahoma passed a bill establishing new rules for treatment advocates and guardianship. Tennessee passed one bill focusing on compliance with ADA standards of care and another bill that repealed a previous law that allowed sterilization of ­those deemed mentally incompetent. The amount and types of legislation passed at the state level to advance the goals of community-­based care are underwhelming, to say the least. In response, the NAMI recommendations for ­future legislation clearly identified the need to increase integration of care. Specifically, NAMI admonished states to provide incentives for and remove barriers to the integration of m ­ ental health, substance abuse, and primary care by allocating Medicaid dollars to health homes based in community ­mental health centers and federally qualified health centers (­these provide care to the uninsured and underinsured). Much more needs to be done to increase workforce capacity, though NAMI had relatively few specific recommendations for how that goal could be achieved. The ACA con­ ental health care, including a tains many provisions with direct relevance to m focus on integration via health homes, medical homes, and accountable care organ­izations, as well as funding for ­family caregivers and education and training of ­mental health care workers. It remains to be seen what ­will happen with the ACA ­under continued Republican pressure to dismantle it. The NAMI 2015 annual report allows us to examine ­whether implementation of the ACA has had much effect on efforts to improve community-­based care. The 2015 report did not identify key themes, but focused on eleven topical areas, many of which constituted the key components of the 2013 report. The topical areas identified are state ­mental health bud­gets; Medicaid and Medicaid expansion; insurance parity; workforce; c­ hildren and youth; early intervention; inpatient and crisis care; civil commitment and court-­ordered treatment; criminal justice; suicide prevention; and housing and employment. Given the Newtown tragedy, it is not surprising that a ­great deal of the 2015

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legislative efforts focused on c­ hildren’s and school m ­ ental health (twenty-­five and twenty-­nine bills, respectively). Additionally, t­ here was considerable legislation directed t­ oward criminal justice reform (N = 53) as well as civil commitment and court-­ordered treatment (N = 34). ­There w ­ ere twenty-­six legislative efforts relevant to m ­ ental health workforces, with most pertaining to the definition of a ­mental health professional and licensure. Only one state, Minnesota, extended recognition of peer specialists as case man­ag­er associates and authorized further study of the most effective way to reimburse peer specialists for their ser­vices. In contrast, ­there ­were only three bills passed that focused on stigma reduction, and only eleven bills that focused on the expansion of civil rights. Most of t­ hese bills dealt with terminology (e.g., to replace “­mental defect” with “­mental disease or disorder”) or clarification as to guardianship or access to information. The only state to pass a law enhancing civil rights protections was North Carolina; this was a result of allegations of abuse in state ­mental hospitals and group homes. In terms of community based care, NAMI (2015) concluded in their overview that “scant attention” was paid to housing or employment, with only eight bills being passed. Montana passed two bills increasing funding for supported employment, housing, and assertive community treatment. V ­ irginia also allocated new funding for supported housing. Only four states passed legislation dealing with the integration of care, none of which provided for additional funding or facilities. North Carolina was targeted as one of only three states with a steady decline in state funding for ­mental health. ­A fter two years of cuts to the m ­ ental health bud­get, the North Carolina governor proposed a 4 ­percent increase, but instead the legislation authorized a 14 ­percent decrease. Minnesota was the only state to increase its m ­ ental health bud­get for the three years covered by the NAMI annual reports. Of par­tic­u­lar relevance is that Minnesota passed legislation funding crisis and emergency ser­vices, expanded supports for suicide prevention, supported employment, and supported housing as well ­ ese are all impor­tant components of as assertive community treatment. Th community-­based care. MHA, another leading ­mental health advocacy group, also released its first report on the state of ­mental health in Amer­i­ca in 2015. MHA relies on national survey data collected by governmental agencies, primarily the Substance Abuse and ­Mental Health Ser­vices Administration (SAMHSA) but also the Centers for Disease Control and Prevention, the Center for M ­ ental Health Ser­vices, the National Survey of C ­ hildren’s Health, and the American Community Survey. The MHA report includes a detailed summary of all data sources and mea­sures used in their evaluation. The MHA ranks states overall and on individual components of care, and in 2019 Minnesota was ranked number one ­ ental health (in 2015 Minnesota was ranked overall and number four in adult m

­Going Backwar • 95

sixth in adult ­mental health). Noteworthy is that North Carolina’s adult ranking dropped from eleventh in 2015 to thirty-­fourth in 2019. We combined the NAMI 2013 legislative data with the 2015 and 2019 MHA data. Rather than discuss all fifty states, we elected to compare four states: Minnesota ­because of its high MHA ranking, and Wisconsin, North Carolina, and Georgia ­because the authors have collected data from ­mental health providers and PSMH in ­these states who ­were described in ­earlier chapters. Minnesota and Wisconsin received relatively high rankings from MHA in 2019 (a higher rank indicates lower prevalence of m ­ ental illness and higher access to care), while North Carolina and Georgia have much lower but similar rankings (see ­table 6.1). Minnesota and Wisconsin are both in the Midwest and have similar population sizes. North Carolina and Georgia are both in the South, and also have similar population sizes—­though considerably more p­ eople live in ­these southern states. Georgia is notable for its relatively high rate of poverty at 19 ­percent. Wisconsin has the highest level of per capital state spending (which includes general funds, federal funds, other state funds, and bonds), while North Carolina and Georgia have similar low levels of state spending. As noted ­earlier, only North Carolina decreased its spending on ­mental health care. Turning to legislation, Minnesota passed eleven ­mental health bills in 2013, with four g­ oing for system improvements and four for community m ­ ental health. Minnesota provided additional funding for supported employment and club­houses, residential treatment, crisis and emergency ser­vices, suicide prevention, and expanded access to ­mental health ser­vices. North Carolina passed two bills for community ­mental health; both ­were in response to prior abuses in group home placements. Wisconsin’s one bill was a comprehensive bill for system-­wide improvements. Georgia’s legislation created a House Study Committee on ­Children’s ­Mental Health, and another bill dealt with school ­mental health. None of ­these four states passed any legislation promoting civil rights or stigma reduction. ­ ental health conditions and changes between the 2015 In terms of their m and 2019 NAMI reports, all four states had similar percentages of ­people living with any ­mental illness (AMI), with only Georgia showing a small decrease in this percentage from 2015 to 2019. However, the percentage of ­people living ­ ental health treatment grew significantly in with AMI who did not receive m Georgia, from 34.8 ­percent to 59.0 ­percent. Wisconsin and North Carolina also saw increases in the number of t­ hose who did not receive treatment. This is due to growth in the percentage of p­ eople with AMI who w ­ ere uninsured. Only Minnesota, with a much smaller growth in uninsured ­people living with AMI, accepted Medicaid expansion with the ACA. This may be due in part to having a Demo­cratic governor; the other three states had a Republican governor. All four states have a similar percentage of the population who identified as

­Table 6.1

Four-­State Comparison of ­Mental Health Indicators Minnesota

Wisconsin

North Carolina

Georgia

MHA 2019 adult rank

4

13

31

34

State Characteristics 2010 population % living in poverty Per capita state bud­get spending

5,303,925 11.6 $6,102

5,686,986 13.3 $8,436

9,525,483 11.6 $4,377

9,687,653 19 $4,248

Demo­cratic 45.2 29

Republican 43.2 31

Republican 41.3 27

Republican 40.3 28

Number of State Legislative Bills Passed in 2013 11 1

5

2

NAMI Theme Identified with Bills Passed System improvement 4 Crisis/inpatient 2 Community 4 Criminal justice 1 Civil rights / stigma 0

0 2 2 1 0

1 0 1 0 0

Po­liti­cal Conditions Governor’s party (2013) % electorate demo­cratic Number of AMI affiliates

0 1 0 0 0

­Mental Health System Conditions Medicaid expansion Yes No No No Increased Increased Decreased Increased MH bud­get change Change in number of clients served in state psychiatric hospitals between 2007 and 2012 Decreased Decreased Decreased Decreased % adults with any m ­ ental illness (AMI) 2015 17.2 2019 18.2

18.0 18.5

16.6 19.0

19.0 17.7

% adults with AMI who received no treatment 2015 45.3 41.3 2019 43.0 52.6

45.4 50.7

34.8 59.0

% adults with AMI who could not receive the treatment they needed 2015 23.0 20.0 20.2 2019 22.3 18.1 24.1

18.9 20.9

% adults with AMI who ­were uninsured 2015 2.0 2019 5.3

4.4 18.5

1.8 6.9

2.6 14.5

­Going Backwar • 97

Demo­cratic, and all had a similar number of NAMI affiliates—­though we do not have a mea­sure of how active t­ hese affiliates are. Overall we found few consistent patterns, except that t­ hose policies that reduce the number of uninsured w ­ ill increase m ­ ental health treatment. Other researchers studying state variations in ­mental health care have also failed to find much to explain diversity in care or funding (Zuvekas and Meyerhoefer 2009). Bonnie et al. (2009) examined legislation passed in V ­ irginia following the ­Virginia Tech shooting in 2007, and found that while legislation was passed, it dealt with outpatient commitment criteria with no investment in community structures. Likewise, legislation passed in North Carolina was a narrow response to charges of inadequate care in group homes, with no additional investment in ser­vices. Bonnie et al. (2009) argue that when states do increase funding for community ser­vices, it tends to be l­imited to some kind of crisis stabilization rather than directed ­toward the larger system of care. This is evident in our state-­level data, with Minnesota having a larger number of legislative bills directed t­ oward system-­level reforms, which is reflected in their high MHA ranking. However, we can learn something about how ­mental health reform can work with a more detailed description of ­mental health reform in two states in order to understand the role of competing po­liti­cal priorities.

Competing Priorities for ­Mental Health Care: A Comparison of Two States Recovery has been a central guiding princi­ple to m ­ ental health reform since the 1990s, providing a vision for the ­future (Mechanic, McAlpine, and Rochefort 2014). The 1999 report ­Mental Health: A Report of the Surgeon General devoted an entire chapter to recovery, and the 2003 President’s New Freedom Commission on M ­ ental Health also placed attention on recovery. Recovery as described by Jacobson and Greenley (2001) includes internal conditions (hope, healing, empowerment, and connection) and external conditions (­human rights, positive culture of health, ser­vices to link consumers to the community). Recovery moves beyond the management of symptoms to the idea of building a productive life (Jacobson 2004; Neugeboren 1999). In 2011, SAMHSA identified four key ele­ments necessary for recovery: disease management, having a stable place to live, meaningful daily activities, and social supports (Mechanic, McAlpine, and Rochefort 2014). Th ­ ese are all impor­tant components to community-­based care, but the implementation of recovery has faced system-­ level barriers due to “the absence of a public policy framework to facilitate the development of appropriate orga­nizational entities to bring together the essential ele­ments of ser­vices, funding, and reimbursement” (Mechanic, McAlpine, and Rochefort 2014, 278).

98  •  Ties That Enable

A competing pressure for reform has been a focus on cost containment. Throughout the 1990s, states and counties placed vari­ous components of their ­mental health care systems u­ nder managed care entities. With managed care, ser­vices are subject to vari­ous utilization control strategies in order to save costs. Most public sector m ­ ental health care is paid for by Medicaid dollars, and the proportion of Medicaid recipients enrolled in managed care plans increased substantially in the1990s. However, the level of Medicaid managed care penetration varies widely from state to state, as does the way in which managed care operates (Hanson and Huskamp 2001). Many states privatized ­mental health care, effectively eroding the public system of care. In addition, m ­ ental health care has been subject to demands for efficiency and adherence to evidence-­based treatments. As described more fully by Jacobson (2004), ­there have been a number of efforts to develop recovery-­based “best practices” and standards for care. Th ­ ese vari­ous efforts represent an attempt to meet demands for efficiency by incorporating precise mea­sure­ment and outcomes assessment. We turn to a comparison of two states with very dif­fer­ent m ­ ental health reform efforts: Wisconsin, which prioritized recovery, and North Carolina, which prioritized managed care and privatization. As described in the previous chapter, Wisconsin is noteworthy for its development of Assertive Community Treatment, which is or­ga­nized around intensive case management. In addition, Wisconsin has sought to develop a recovery-­oriented ­mental health system within the larger framework of managed care (Jacobson 2004). In 1995 the Wisconsin Department of Health and ­ ental health system, ­Human Ser­vices explored the possibility of a managed m and the final report recommended that managed care be phased in by first funding demonstration proj­ects in pi­lot counties, then introducing managed care throughout the state. Reform efforts then moved to the Blue Ribbon Commission, which was established by then-­governor Tommy Thompson.1 The commission included a diverse group of government officials, providers, consumers, and advocates in what Jacobson (2004) describes as an exercise in co­a li­tion building. The final report of the Blue Ribbon Commission on M ­ ental Health (submitted to the governor of Wisconsin in 1997) sought to Maintain shared state/county responsibility; Shift to an environment that emphasized managed care, allowing counties to bid to become managed care entities; and 3 Develop a m ­ ental health system that emphasized recovery. 1 2

While the state wanted care to be managed, they did not want ser­vices to be privatized. Counties w ­ ere to remain firmly in control of care. Vari­ous work groups w ­ ere formed to implement the plan, and debate continued between 1997 to 1999 over the definition and specification of recovery, and ­whether or not

­Going Backwar • 99

recovery was compatible with managed care. A Recovery Workgroup worked on ways in which recovery could be defined and implemented within the larger managed care framework. Of note is that the Recovery Workgroups ­were not able to define recovery; rather, they “settled the definitional prob­lem by tacitly agreeing on a set of overarching values . . . ​which ­were seen to represent the ‘essence’ of recovery yet ­were nonspecific and flexible” (Jacobson 2004, 97). While this definitional openness fit the needs of a locally run m ­ ental health care system with many constituencies, it is hard to assess what cannot be defined. In implementing the recovery model, participants in Wisconsin directly confronted the inherent conflict between the ideological imperatives of recovery with the technical demands for efficiency. Specifically, the concepts of medical necessity and accountability both run c­ ounter to the princi­ples of recovery (Jacobson 2004). As of 2003 (the same time that North Carolina mandated its reform law), Wisconsin had not been able to implement managed care in any of the county demonstration proj­ects b­ ecause they ­were not able to determine an acceptable capitation rate. Consequently, the demonstration proj­ ects focused almost entirely on recovery (Jacobson 2004). The only other notable change was a series of professional workshops across the state or­ga­nized around recovery. North Carolina moved to review its ­mental health system and make needed reforms fairly late compared to other states. The reform was in response to a growing m ­ ental health crisis due to rapid growth in expenditures for developmental disabilities, growing fiscal prob­lems of community ­mental health centers (local authorities), and prob­lems with misuse of federal Medicaid dollars.2 ­There was also a crisis of leadership—­both within the state Division of M ­ ental Health and within the legislature. In addition, a series run by both the Raleigh (the state capital) and Charlotte newspapers pointed to neglect and a lack of care in the state ­mental health system, raising public awareness of the inability ­ ental health system to provide adequate care. of the m In 1998, the state auditor was charged with overseeing a comprehensive study of the state’s psychiatric hospitals and ­mental health delivery system. The loss in confidence in the state Division of ­Mental Health was so severe that no one trusted the agency to conduct its own research on the system of care. Consequently, two private consulting firms ­were hired, and a final report was made to the state auditor in 2000. This report made specific recommendations for system-­wide reform. In response, the state legislature named a Legislative Oversight Committee in 2000 to refine and implement the redesign plan. This committee developed legislation (HB 381 / SB 374) that mandated major reform to the state-­wide system of care. The bill was passed in 2002, with implemen­ ental health ser­vices tation beginning July 1, 2003. The law mandated that m could no longer be provided by local authorities (which w ­ ere or­ga­nized along county lines); instead, agencies ­were to contract out all direct care ser­vices to a

100  •  Ties That Enable

qualified provider network. Area authorities w ­ ere to operate as managed behavioral health care organ­izations. In short, public sector ­mental health was privatized. Each local authority developed a business plan to become a Local Management Entity (LME), which spells out how local authorities ­will manage (rather than provide) ser­vices. LMEs could contract out management, or they could manage ser­vices themselves. LMEs also had to obtain national certification. Local authorities ­were given three years (beginning July 1, 2003) to implement their local business plans and to complete system-­wide reforms. Some LMEs had well-­defined plans in advance of the 2003 deadline; ­others had to start from scratch to develop a new model of ser­vice provision. ­There was considerable diversity in m ­ ental health ser­vice provision in North Carolina, and this diversity has increased with the state privatization. A period of considerable chaos resulted, and ser­vices became even more fragmented with privatization. Some psychiatrists and other m ­ ental health providers left the system, refusing to become part of a privatized system of providers. In 2004 the director of the North Carolina Division of ­Mental Health went to each area authority to address concerns and to defend the state plan, and the state m ­ ental health association held a number of forums to discuss the consequences of the reform efforts. Attempts to correct the worst abuses in the system continue; few are happy with the existing system, and it is very difficult for many ­people to get needed care. What can we learn from the comparison of North Carolina and Wisconsin? North Carolina mandated privatization in part b­ ecause their authority has always been “top-­down,” with the state Division of ­Mental Health dictating how local authorities would structure their systems of care. Rather than draw on the expertise of local researchers, advocates, and providers, the state Division of ­Mental Health contracted out study of the m ­ ental health system and development of a reform package to private agencies. The state had long had an ideological commitment to managed care, as a result of power­ful business interests. Even when one of the state’s strongest m ­ ental health systems (Mecklenburg County, which includes the city of Charlotte) established a workable managed care plan and offered to first serve as a demonstration site, and then ­ ental to manage care for the other counties, the North Carolina Division of M Health still opted for a system that eroded community-­based care in ­favor of privatization. In contrast, Wisconsin is a state with a strong professional commitment to community-­based care and empowerment. Wisconsin is the home of the Program for Assertive Community Treatment (PACT) model, which focuses on integrating patients into the community. In 1983 Wisconsin required all counties to develop PACT-­like Community Support Programs. At the same time, Wisconsin has always been a state with strong county ­mental health systems and local autonomy. The state’s Blue Ribbon Commission consisted of a

­Going Backwar • 101

representative body of constituents, and subsequent work groups also contained diverse stakeholders, who argued about the meaning of recovery, how to implement recovery, and w ­ hether recovery could be implemented within a managed care environment (Jacobson 2004). Rather than prioritizing managed care, Wisconsin prioritized recovery. While ­there was obvious disagreement between dif­fer­ent professional groups, they ­were able to put aside their differences and fight for normative demands for care (recovery), resisting demands for cost containment. However, large-­scale reform efforts proved to be problematic for both states. In their 2009 Grading the States report, NAMI (2009, 123) stated that North Carolina’s D grade “does not even begin to convey the chaos that now pervades the state’s ­mental health system.” They targeted North Carolina’s privatization of community ­mental health ser­vices as a source of the chaos, due in large part to system-­level complexity and mismanagement of funds. In addition, ­there have been ongoing safety concerns and litigation over treatment of clients in the four state hospitals. At the same time, NAMI (2009, 165) found Wisconsin’s “complex, decentralized system” to be a source of its lack of pro­gress and reduced the state’s 2006 grade of B to a C. NAMI (2009, 165) concluded that Wisconsin’s “vision of recovery, wellness, and consumer and ­family inclusion” was being “­limited by its ­mental health care system’s county-­by-­county fragmentation.” North Carolina’s reforms ­were too top-­down, while Wisconsin’s may have been too bottom-up. Furthermore, issues related to centralized versus decentralized control are complex and are certainly exacerbated by conflicts between vari­ous stakeholders in each state (Scheid 2008). Since the North Carolina and Wisconsin reforms we have survived an economic recession (officially recognized in 2008) that was marked by unemployment, stagnant or declining wages, and increased social in­equality. Critical to ­mental health care has been the subsequent decline in state revenues; the 2013 NAMI report on state spending showed that twenty-­eight states cut funding for ­mental health care between 2009 and 2012. At the same time, the ACA extended m ­ ental health care by including both ­mental health and substance abuse ser­vices u­ nder the list of essential benefits to be covered by insurance plans. Th ­ ose states that accepted Medicaid ­under the ACA w ­ ere also able to provide care to many more previously uninsured PSMH. Neither North Carolina nor Wisconsin accepted Medicaid expansion (in contrast, Minnesota did). The ACA also promoted integration of health and behavioral health ser­ vices via use of funding patient-­centered medical homes (or Affordable Care Organ­izations) and increased funding for ­family caregivers as well as workforce education and training. The f­ uture of the ACA remains uncertain, so it is ­ ental health care w ­ ill change in the comunclear how Medicaid funding for m ing years.

102  •  Ties That Enable

Discussion We end our consideration of ­mental health policy at both the federal and state levels with no clear road forward to an improved ­mental health system. The challenges facing ­mental health policy are clearly outlined by Mechanic, McAlpine, and Rochefort (2014). First, the per­sis­tence of stigma results in few legislative initiatives that seek to combat stigma. We saw that states enacted more legislation aimed at crisis or inpatient care as well as criteria for involuntary civil commitment, all directed t­ oward greater control of individuals. Second, diverse definitions of m ­ ental health prob­lems as individual pathology or nonconformity result in inertia. Rather than leading to major reforms to ­mental health systems, debates over the prob­lem to be solved result in “inaction, or cautious adherence to the status quo, and the sense that more time and study are needed to chart a decisive course of action” (Mechanic, McAlpine, and Rochefort 2014, 321). Third, ser­vice complexity is a major prob­lem—­not only are t­ here fifty dif­fer­ent state m ­ ental health systems, but within each state t­ here is considerable variability, with privatization contributing to the diversity of care options. We saw this in the comparison of Wisconsin and North Carolina, with both being criticized by NAMI for fragmentation and system complexity. An additional source of complexity and fragmentation is that many PSMH need housing, income, and social supports. Th ­ ese diverse social welfare programs need to be integrated with health and ­mental health care ser­vices for community care to be realized, and call for reforms not to only m ­ ental health programs, but to the welfare systems that meet the multiple needs of disenfranchised ­people. In the concluding chapter we undertake a more extensive consideration of ­mental health justice and equity.

7

Working t­ oward Community Solidarity and Social Justice In this concluding chapter we move from state-­level reform efforts to a wider consideration of how we can achieve social justice for p­ eople with serious m ­ ental health prob­lems (PSMH). In a 2015 NPR interview, the former director of the National Institutes of ­Mental Health, Thomas Insel, stated that the “­mental health system is badly broken” (quoted in Gordon 2018, 358). The m ­ ental health care nonsystem is still in a state of disarray, with very few of ­those with serious ­mental illness receiving appropriate care or treatment (Sederer and Sharfstein 2014). That so many receive care in jails or prisons is “a situation which should embarrass all thoughtful citizens” (Mechanic 2006, 80). Rather than address the core prob­lems of stigma and marginalization, we continue to hold m ­ ental health providers and clients accountable for meeting outcomes defined within the framework of cost containment. Yet we fail to assess the real costs of inadequate ­mental health care, which are born by the wider community. We need to insist that health care be mea­sured by a wider social ethic than that of cost containment, and this ethic needs to promote community solidarity and social justice. We return to the conceptual framework we described in chapter 1, which has not only or­ga­nized this book, but which has guided a wide variety of theories that link individuals to societal organ­izations to larger system-­level frameworks. In sociology we often refer to the linkages of the micro (the individual level) to the meso (orga­nizational level) to the macro (structural level). With 103

104  •  Ties That Enable

Micro Level Consumers and providers Empowerment Resiliency Meso Level Local communities Enabling recovery Advocacy and training Macro Level National priorities Equity Resistance

FIG. 7.1   Wholistic Framework for M ­ ental Health Justice

re­spect to ­mental health reforms, we seek individuals who are resilient and empowered. However, social structures such as ­those provided by the Oaks and community ­mental health facilities need to provide spaces for recovery; they must enable individuals to feel empowered. Yet the wider social and economic system constrains the opportunities available to both individuals and communities—­that is, we operate within a system of pervasive social in­equality that reinforces stigma and marginalization. At the systems level we must work ­toward reforms that move the entire society to greater equity and social justice, which ­will then reduce stigma and marginalization. Consequently, we supplement our original Wholistic Framework for Community Solidarity described in chapter 1 with the Wholistic Framework for ­Mental Health Justice (figure 7.1). Reforms must be both bottom-up from the community, with a priority on local-­level advocacy and provision of social supports to needy individuals, and top-­down from the federal government, which provides financing and standards for care, as well as from other national initiatives with vari­ous professional organ­izations and state-­level initiatives providing the necessary mediating structures that link community initiatives to national priorities. We begin with theory of community justice developed by Galarneau (2016), who argues that health care is not only an ethical good; it is a community good.

Working ­toward Community Solidarity and Social Justice • 105

Communities are the primary source of social solidarity, and given the diversity of communities, solutions to the prob­lems faced by PSMH must involve ongoing community-­based initiatives.

Community Initiatives Galarneau argues that health care is based on social relationships at the community level. However, what constitutes a community? Galarneau (2016, 1) defines communities as ­those “diverse groups typically smaller than society, but bigger than most families . . . ​interconnected by culture, religion, locality, or illness.” This is a good start—­and points to the fact that social relationships are central to any type of community. However, communities are both inclusive and exclusive. Consider religious communities in general and their reaction to ­mental health prob­lems. While many congregations provide key supports, ­others view m ­ ental illness as a moral failure and admonish individuals to pray for relief. As such, religious communities can be obstacles to health care and health justice. At the same time, religion is clearly a unifying force within communities, and provides strong network ties as well as “generosity and civic engagement” (Putnam and Campbell 2010, 32). Churches are impor­tant partners in efforts to expand access to care and reduce stigma, and in the provision of needed social supports for PSMH. However, religious leaders and their communities may need to be educated about serious m ­ ental health prob­lems, pointing to the need for mediating structures, as we ­will see below. Congregations are the most common form of association in the United States (Putnam and Campbell 2010), and given the dearth of other forms of civic engagement, must be included in considerations of community justice. More fundamentally, religion is a major source of moral obligation, as well as individual and group empowerment, which Yamane (2017) refers to as the new voluntarism. However religion has increasingly become associated with conservative po­liti­cal issues, largely due to an emphasis on traditional ­family values and views on abortion and homo­sexuality. This conservatism has been an obstacle to justice and egalitarian policies (Galarneau 2016). Yet religious congregations do play a critical role in providing locally based social connections, as we saw with the Oaks. Communities are also where health care occurs. As noted by Galarneau (2016, 19), communities are especially impor­tant for “needy persons, especially ­those with chronic illnesses.” Religious communities have been critical to the provision of need-­based health care, providing care for their own members and extending care to members outside the congregation. As we have seen with the Oaks, local churches can provide space, resources, and social supports. Hale, Bennett, and Galiatsatos (2018) describe the many ways in which religious congregations can improve health in their communities. Congregations not only

106  •  Ties That Enable

promote the moral incentive of taking care of the sick and needy; they can also provide needed ­human capital in the form of voluntarism, as well as concrete social supports. Health researchers increasingly emphasize the role of place, or neighborhood, in understanding health care needs and the provision of health care (Robert, Cagney, and Weden 2010). Most PSMH define their communities in terms of where they live (Lincoln and Adams 2016), and as we saw in chapters 4 and 5, local club­houses and day programs are impor­tant sources of community for participants. Social networks have positive effects on individual health, and social ties are often linked to one’s neighborhood. Neighborhoods not only shape our health (think about food deserts or accessible walkways); they also provide opportunities for individuals to change their local environments. However, neighborhoods have become increasingly segregated by income in­equality, with “affluent gated communities at one end of the spectrum matched by zones of concentrated poverty at the other,” resulting in greater social distance between the rich and poor (Putnam and Campbell 2010, 248). While religious participation for the wealthy does in fact lead to more friendships with t­ hose not so well off (due to network ties within congregations), this is largely due to congregations that have greater social class diversity to begin with (Putnam and Campbell 2010). Some concrete ideas for involving PSMH in socially diverse communities would be organ­izing community gardens, marketing the proceeds of t­ hese gardens in weekly farmer’s markets, and providing community-­based l­ abor pools that would link individuals who need work done with t­ hose needing work to do. The meals cooked by PSMH in day programs and club­houses can be delivered to the homebound via Friendship Trays or Meals on Wheels. Volunteers from all walks of life can come together to meet locally defined prob­lems in times of crisis by working with the Red Cross or other agencies to cook meals, distribute donations, and assist with community rebuilding. How e­ lse can communities work to improve care for PSMH? Examples of community-­based solutions that extend beyond voluntarism relevant to m ­ ental health can be found in community health centers, community-­based needs assessments, and community advocacy groups (Galarneau 2016). All three forms of community involvement provide examples of successful efforts in ­ ental health care. Community advisory boards, special commisimproving m sions, and town halls are concrete ways to engage members of the wider community (Galarneau 2016), and the first author has had success working with community groups to advocate for marginalized groups and to improve system integration (Scheid 2015). Local health departments can play a leadership role via comprehensive needs assessments and working to develop broad-­based advisory councils and groups. As noted by Galarneau (2016), a good needs assessment can bridge diverse health prob­lems in a given community (for

Working ­toward Community Solidarity and Social Justice • 107

example, obesity and ­mental health issues), and she cites the RWJ Foundation’s Consumer Voices for Coverage as an example. More fundamentally, the prob­lems of PSMH need to be communicated, and efforts need to be made to have communities realize that ­these are “our” prob­lems—­not “their” prob­lems. This is where churches can play a major role by educating and involving their congregations in programs to solve community prob­lems as well as providing a space for meetings (Hale, Bennett, and Galiatsatos 2018). Many of the support groups listed by Al-­A non are hosted at churches. Self-­help groups are also impor­tant and can also work ­toward advocacy at the local level. ­There is a renewed focus on the mind-­body connection with mindfulness and yoga workshops, and this is where the worried well might meet and interact with PSMH. Most of us have a f­ amily member or close friend suffering from a more severe ­mental illness than the normal depression and anxiety we all confront. Breaking down stigma at the individual level requires interaction and ties that bridge the divide between “us” and “them” with “they are us, and we are them.” Health justice requires active participation at the community level with PSMH, their families, and their local communities all working to reduce marginalization and stigma and to provide more inclusive, as opposed to exclusive, homes for PSMH. However, voluntary efforts can only go so far. Advocacy must be collective in order to improve the agency of individuals (Yanos, Knight, and Roe 2007). To effectively confront structurally based barriers advocates need professional expertise. We turn next to a consideration of the role of vari­ous mediating structures in facilitating ­mental health care justice.

Mediating Structures Patient empowerment and the accompanying emphasis on consumerism are all well and good, but PSMH are marginalized, disenfranchised, and relatively powerless on their own. While the Oaks provided opportunities for enhanced capabilities for PSMH, the staff was a driving ­factor in creating an environment of equality (M. Smith 2017). True empowerment means having an effective voice, and m ­ ental health justice ­will not be realized without the assistance of professional and advocacy groups that perform the functions of mediatory organ­izations and enable individual and community actors. Community-­based advocacy and co­a li­tions need the supports of mediating organ­izations that provide training and resources and link local efforts to wider reform efforts. The concept of mediating structures was originally developed by Berger and Neuhaus (1977), who drew from the classic concerns over community solidarity raised by Emile Durkheim. Durkheim argued that modern society with its large, complex social institutions no longer provides the individual with social

108  •  Ties That Enable

connections, resulting in a loss of social integration and regulation. According to Berger and Neuhaus (1977), it is in the private sphere of families, friends, and neighbors where individuals find meaning and a sense of belonging. Mediating structures are ­those organ­izations that are situated between the larger institutions of modern life (such as the health care system) and the private sphere of the individual. Berger and Neuhaus (1977) identify religious organ­ izations, voluntary associations, neighborhoods, and ethnic communities as impor­tant mediating structures. As we argued above, t­ hese community-­based groups are critical to health justice, as they enable individuals as well as communities. However, a second level of mediating structures is needed to link community-­level initiatives to national-­level reform efforts, which can then reinforce and sustain local efforts. Mediating organ­izations at the meso or societal level include advocacy organ­izations, occupational organ­izations, and professional movements. Durkheim also pointed to the power of professional and occupational organ­izations in providing for new forms of solidarity. ­There is a plethora of professional advocacy organ­izations that work to advance ­mental health care. As we saw in the last chapter, NAMI and MHA have been central in providing assessments of ­mental health care that focus on state-­level initiatives and reforms efforts. NAMI and MHA are both national advocacy groups with state-­level and local affiliates. Local affiliates can provide opportunities for PSMH to advocate on their own behalf, and sponsor advocacy as well as cross-­trainings. NAMI was instrumental in getting participants at the Oaks involved in advocacy, as we saw in chapter 5. Local affiliates can also work with congregations and provide education and leadership in the development of more programs like the Oaks. For example, the MHA of the Central Carolinas held a daylong training in March 2018 about ­mental health prob­lems, and provided certification to participants. Given their involvement at both the local and federal levels, as well as their wide and inclusive member­ ental health ships, NAMI and MHA play a critical role advocating for major m reform. The conference theme for the 2021 MHA annual conference is “From Resiliency to Recovery,” and it ­will provide opportunities for enhanced peer and consumer involvement. Another major advocacy organ­ization is the Bazelon Center for ­Mental Health Law, which is focused on l­ egal reforms; in 2001 they developed a model law for ­mental health reform (www​.­bazelong​.­org​/­newvisionofpublicmental​.­html, accessed June 24, 2002). Titled An Act Providing a Right to ­Mental Health Ser­vices and Supports, the model law is based on ­legal doctrine that supports the right to treatment in the community. U ­ nder the law, eligible individuals (eligibility would be determined by states) are legally entitled to recovery-­ oriented ­mental health ser­vices that ­will support and sustain community integration and economic stability. The Bazelon Center has also been highly critical of involuntary commitment, as well as the privatization of m ­ ental health care.

Working ­toward Community Solidarity and Social Justice • 109

Another advocacy group, the National Empowerment Center, also promotes the ideals of recovery, consumer empowerment, and peer supports. However, PSMH are not empowered consumers—­they are marginalized and have ­limited resources on their own with which to advocate. Instead, as patients in a complex health care system, they need access to professional health advocates (Hoffman et al. 2011). ­Mental health advocacy efforts need to involve the professional groups who provide care for PSMH, and who have more specialized training and experiences upon which to draw. Advocacy is not only a part of professionally based medical education (Hoffman et al. 2011); it is also an impor­tant ethical imperative for many professional groups. At a minimum, professional providers have the authority and power to speak not for, but with their patients. The National Association of Social Workers, the American Psychiatric Association, and the American Psychological Association represent the professionals who provide care to PSMH, and they also help advocate for ­mental health reforms. As a concrete example, in North Carolina social workers w ­ ere instrumental in pushing legislation to protect patients in large group homes and provided documentation of patient abuse in the four state hospitals. The American Public Health Association (APHA) is another impor­tant professional organ­ization promoting health care justice and reform, and links a large number of health professionals and advocates. The annual meeting of the APHA draws well over 10,000 registered participants, and the work of both community-­and national-­level advocates is highlighted. In February 2019, the APHA held a policy action institute at which Nancy Pelosi addressed 350 p­ eople; in February  2020 another policy action institute focused on advocacy was held. The APHA also sponsors a Healthiest Cities & Communities Challenge that recognizes communities for efforts to improve community health. A final category of professional mediating organ­ization is professional movements, a term developed by Joseph Harris (2017) in his comparative analy­sis of the politics b­ ehind universal health coverage and access to AIDS treatment in Thailand, South Africa, and Brazil. Harris (2017, 21) found that ­these reform ­ ere led by a co­ali­tion of health care professionals and l­ egal experts who efforts w worked on “behalf of the poor and ­those in need.” Professional movements are dif­f er­ent than occupational organ­izations, as professionals are working outside of their normal work roles or jurisdictions. Doctors, ­lawyers, and other health care providers use their expertise and specialized knowledge to develop policy agendas and strategies to implement ­these policies. Professional movements can then hold governments accountable by playing a role in evaluating policies. While law establishes a moral referendum for social policy, it should also serve as a watchdog for ensuring that policies are implemented as intended (Stone ­ ental health, a co­ali­tion of medical and ­legal professionals w ­ ill be 1975). In m necessary to advance m ­ ental health justice, given the complexity of issues related

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to civil rights for PSMH. Furthermore, professional health care providers are ultimately responsible for advancing ethical mandates that promote patient rights, while also balancing the real­ity of economic constraints (Barr 2016, 372). Professionals can work to implement an ethic of compassion rather than coercion (Wales and Hiday 2006). However, a major barrier to professional involvement is the fact that providers are overwhelmed by a lack of resources, too many PSMH needing care, and the looming shortage of m ­ ental health care workers, as described in chapter 5. M ­ ental health providers themselves need to be empowered in order to advocate successfully for their clients. While advocacy and professional groups are impor­tant mediators between individually based community efforts and national-­level reform, ­these groups do not always work in concert with one another. As documented by Miller and Hanson (2016), advocacy groups often have opposing positions about fundamental issues of civil rights and involuntary outpatient commitment, which reflect contradictory views about the sources of m ­ ental health prob­lems and consequently the solutions. For example, the Treatment Advocacy Center promotes a more medicalized view of ­mental health prob­lems, with its founder, E. Fuller Torrey, arguing that PSMH may not know that they need help due to anosognosia. Consequently, both Torrey and the Treatment Advocacy Center allow that forced treatment may be necessary even when an individual is not dangerous (Miller and Hanson 2016). Other advocacy groups (such as the Bazelon Center) have a long-­standing opposition to involuntary commitment. ­Mental health providers are also divided by dif­fer­ent philosophies of care and treatment (Scheid 2004), although cross-­training and the use of multidisciplinary teams (as described in chapter 5) that include prosumers can serve as impor­tant vehicles to overcome t­ hese divides. Cross-­training can help unite providers and work to not only empower them, but to enable them by developing concrete strategies for advocacy and stigma re­sis­tance in their communities. As articulated by Rochefort (1999, 482–483), ­these kinds of “conflicts are a mask for leaving basic differences unresolved. . . . ​Prob­lems of ­mental illness pose a number of fundamental questions of social justice in response to which the American po­liti­cal system has always hedged. Is the receipt of health care, including m ­ ental health ser­vices, a right? Do mentally ill persons have a guarantee to adequate community care, including needed housing arrangements and social support? Is it appropriate for mentally ill persons to receive care of widely disparate quality simply as a function of where they happen to live?” ­These questions are relevant to larger reforms to our health care system as well (Barr 2016) and begin with the essential question of w ­ hether health care (including m ­ ental health care) is a right or a consumer good to be paid for as best as one can. Questions more specific to PSMH are ­whether ­there should be access to community care, including housing and social supports, and w ­ hether the quality of types of community care should reflect wide local and state

Working ­toward Community Solidarity and Social Justice • 111

disparities in funding and supports. National, or federal, initiatives that provide equitable access to health care and social welfare programs are necessary for ­mental health justice.

National Priorities Advocacy is a critical component to comprehensive ­mental health care and reform (Stylianos and Kehyayan 2012). However, neither PSMH nor their providers are empowered to serve as effective advocates in the current environment. Community-­based groups and advocates as well as researchers are forced to compete for funding to support research that cannot lead to any kind of significant changes to the system of care. Consequently, community-­based advocacy efforts need to move beyond market-­based models of patient choice and consumerism to true demo­cratic deliberation (R. Grob and Schlesinger 2011). As articulated by Tomes and Hoffman (2011, 13), patient empowerment takes place in an environment of “pervasive social and economic in­equality. Differences of power, income, resources, and access to the media shape the ability of patient groups to affect policy.” The consumer-­survivor movement in ­mental health cannot c­ ounter the power of the phar­ma­ceu­ti­cal industry, the medical profession, or governmental agencies (Tomes 2011). Galarneau (2016, 76) also targets our “individualistic, disease-­oriented, treatment-­centered biomedical model as well as the economic incentives and efficiency goals of the current U.S. health care system” as a barrier to community justice. Reform w ­ ill require system-­level changes and top-­down strategies. Policy goals should not target individuals and the development of capacities and empowerment; rather, they need to focus on systemic-­level changes to the organ­ization and delivery of ­mental health ser­vices that lead to meaningful enablement and recovery. Resources need to be increased to support not only ­mental health ser­vices, but the mediating agencies and groups that link and enable individuals to work to change the larger social structures that limit and constrain individual action. Ultimately, we w ­ ill have to confront the real­ity that the current system has been developed and is or­ga­nized around the precept that health care is a commodity, and that profits and the accumulation of wealth are the primary goals motivating key stakeholders who control health care (Barr 2016). Furthermore, the system is characterized by pervasive in­equality that stigmatizes and marginalizes the most vulnerable individuals—­resulting in what Paul Farmer has termed structural vio­lence. Structural vio­lence is evident in the poverty, lack of adequate housing and income supports, dearth of public health resources, and shortened life spans of PSMH. Rather than incremental reform, our health care nonsystem needs to be fundamentally reor­ga­nized around a dif­fer­ent goal, with less priority placed on the costs of care, and more on access to quality health care, which is not cheap. The values of quality care and greater access to

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care are goals that motivate health care providers and patients, while corporate forces push for the priority of the accumulation of wealth as a primary goal. The contradiction between providing the full continuum of care needed by populations with chronic health care needs and a system designed to provide as ­little care as pos­si­ble (or the minimal amount of care that one can afford) is increasingly obvious. The 2000 and 2001 Institute of Medicine reports on quality care identified contradictory princi­ples for quality care: patient-­centered, effective, efficient, and equitable (Timmermans and Berg 2003). Each priority is subject to pro­cesses of subjective interpretation and redefinition, with notable variations in what counts as effective treatment. ­These debates are even more impor­tant in m ­ ental health care, as t­ here is ­little consensus over the source (i.e., the etiology or cause) of ­mental illness or over its treatment. However, we do know some t­ hings, and consensus over ­these key policy areas is necessary in order to direct m ­ ental health reform efforts. First, we know that supported employment and meaningful daily activities contribute to enhanced capacities for individuals, a higher quality of life, and ultimately empowerment. At the same time, work is also a significant source of stress and can lead to psychological distress, poor sleep quality, and unhappiness (Schneider and Harknett 2019). While communities can work to establish locally based forms of employment that provide for economic stability, SSI and SSDI laws need to be changed to allow for the episodic work patterns characteristic of anyone living with a serious chronic illness. PSMH may need non-­normal work environments, including voluntary activities, in order to not only meet basic ­human needs, but to flourish. Reforms to SSI and SSDI need to be a priority for national reform efforts. Community advocates can also work with local business leaders and public agencies to improve employment opportunities for meaningful work and to help address stigma. Second, Medicaid needs to be reformed (along with Medicare) to provide for the long-­term health and social needs not only of PSMH, but of other chronic care groups as well, including the el­derly. Th ­ ere could not be a more complicated or inequitable system than how we currently pay for health care for the el­derly (Medicare) and the poor and disabled (Medicaid). Both programs need to be combined into a more universal system that ­will ensure basic health care to all who need it (and ­those who can afford to pay more should certainly do so). A system of community supports and home health as opposed to institutional care can integrate the strengths and capacities of multiple chronic care populations. PSMH can play many roles in an alternative system of care where they can meet the essential needs of meal preparation, companionship, and rehabilitation of populations facing physical limitations or the complications of aging. As described in chapter 5, PSMH need to be actively involved in systems of care as prosumers where they can enable o­ thers to achieve meaningful lives and recovery.

Working ­toward Community Solidarity and Social Justice • 113

Third, following ­these essential reforms to financing, national and federal initiatives need to develop standardized mediating structures necessary to community stability and integration. Evidence-­based practices programs exist that promote housing (Housing First), employment (Supported Employment), and case management (PACT), and ­there is a g­ reat deal of information on the implementation of each of ­these programs. Peer support ser­vices are also critical, and while the majority of states do fund t­ hese programs, PSMH need to be actively involved in shared decisions about community-­based ser­vice options and their implementation at the local level (Watson, Adams, and Jackson 2016). A major prob­lem is that few communities have the resources to provide supportive ser­vices to all who need them, which is why national initiatives are necessary. In addition to being efficient and effective, ­mental health programs need to be evaluated on the basis to which care is equitably distributed to all who need it. Fi­nally, stigma remains a formidable barrier—­operating at all levels of our models of community enablement and ­mental health reform. Stigma reflects public perception, and views of PSMH as threatening or dangerous have been reinforced by attributions that ­mental illness is the primary cause of recent mass shootings. While such politicized events as Sandy Hook can result in legislative reforms, too often t­ hese efforts can increase the stigmatization of t­ hose with ­mental health prob­lems (J. Rosenberg 2014). As C. W. Mills (1959) noted, the ­mental health of individuals is often a scapegoat for larger social prob­lems. In the wake of shootings in Sri Lanka and New Zealand (spring 2019), even the more liberal media refer to perpetrators as “madmen.” Rather than enhancing community supports, reform efforts have concentrated on restricting the access of individuals with a ­mental health diagnosis to guns and increasing the social control of such individuals in the community with involuntary (or assisted) outpatient commitment. Advocates need to educate the public that t­ hose with even the most severe ­mental health prob­lems are generally not violent or dangerous, and that the civil rights of PSMH are in danger. Ser­vices that encourage empowerment can reduce stigma, and the reduction of stigma can positively impact self-­identity and social status. With recovery, the “old” stigmatized self is replaced with a “new” empowered self, and mediating social structures such as the Oaks, club­houses, advocacy, and cross-­training can all provide PSMH with the group memberships that can lead to a positive, socially valued identity. ­Mental health providers and prosumers can all work with PSMH to reduce the effects internalized stigma (demoralization and devaluation) and to decrease the public stigma of PSMH as dangerous, unpredictable, irrational, and incompetent. Impor­tant to the reduction of both private and public stigma are re­sis­tance strategies. Thoits (2011b) describes two re­sis­tance strategies to stigma: refusing to accept the label (a deflecting strategy) or challenging the label. Challenging

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strategies attempt to change the views of o­ thers, and need to be utilized by professional and advocacy groups at the national level as a primary form of advocacy that consumers and their families can actively engage in. Re­sis­tance strategies should be a core component of recovery efforts and advocacy, and they can provide a positive identity as well as improve prospects for socioeconomic well-­being. Rather than focusing solely on individual resilience and recovery, providers, advocates, and researchers need to promote re­sis­tance and develop concrete strategies for PSMH to challenge stigma at all levels. A major step to changing societal-­level stigma is to focus on public perception. Researchers and advocates in the United States need to follow the United Kingdom in seeing m ­ ental illness as a disability, which entails a shift from a medical model to a social model (Keith and Keith 2013; Spandler, Anderson, and Sapey 2015). Disability theory emphasizes the pro­cess of exclusion we have highlighted in this book and points to systems of institutionalized oppression that restrict access (Mulvany 2000). Rather than being a person with a “­mental illness,” PSMH have a psychiatric disability, a label protected by law with the 1990 Americans with Disabilities Act. While it is certainly true that ac­cep­tance of m ­ ental impairments such as racing thoughts and delusion is more difficult than ac­cep­tance of physical limitations (Mulvany 2000), the increased attention to m ­ ental health provides an impor­tant win­dow to change public stigma. Younger adults are much more likely to acknowledge a psychiatric disability, be it attention deficit disorder, depression, anxiety, or bipolar disorder, and to accept their disability as a unique aspect of their identity. Disability is not a ­matter of individual health, psychiatric symptoms, ge­ne­tics, or biochemistry; instead, the roots of disability lie in society. Disabilities are made worse by society’s inability to create supportive environments (Keith and Keith 2013). Disability rights activist groups (such as ADAPT) have been vocal in advocating for the ACA, expanded Medicaid, and enhanced social supports for t­ hose living with disabilities. Advocates for improved ­mental health care ser­vices should link with disability rights groups and pre­sent a unified front to effect meaningful social changes at the national and state levels. Stigma is reinforced and perpetuated by in­equality, so reform efforts need to emphasize the citizen rights of ­those with psychiatric disabilities, rather than merely focusing on civil liberties (Carney 2008). National reform efforts can fight for the individual’s right to health ser­vices and needed social supports and insist on accountability mea­sures that guarantee access to community care—in short, an ethic of health equity.

Conclusion Advocacy is about re­sis­tance to existing structures and policies that stigmatize and marginalize PSMH; it does not m ­ atter if t­hese efforts are ultimately

Working ­toward Community Solidarity and Social Justice • 115

successful (Epstein 2011). What ­matters is that ­people are working to change the rules by which the game is played to enhance the public good and promote equity (R. Grob and Schlesinger 2011). Advocates, consumers, and providers need to band together and become an effective countervailing power to corporate interests. In lieu of any foreseeable major l­egal reforms, how e­ lse should advocacy work to effect change in m ­ ental health care? One ave­nue is to fight for the inclusion of an ethical foundation by which we can evaluate policy reforms and ser­vice offerings. Just as we evaluate the merits of new drugs, we need to evaluate the merits of policy initiatives on the basis of a higher ethical standard (Russell 2011). In the evaluation of health ser­vices, “the language of social justice is largely absent” (Farmer 2005, 177). Health policy has been the result of shifting preferences for access (the Affordable Care Act seeking to increase access), quality (as evidenced by current quality improvement efforts), and cost containment (both in the private insurance market and in the public sector to limit funding for agencies that provide for health and housing). It is time to add a fourth pillar—an ethic of social justice based on equity. Paul Farmer is well known for linking his own advocacy efforts to larger issues of social justice; he argues that “the commodification of medicine invariably punishes the vulnerable. . . . ​­There is an enormous difference between seeing p­ eople as victims of innate shortcomings and seeing them as victims of structural vio­lence” (2005, 152–153). Structural vio­lence accounts for the systematic exclusion of individuals with schizo­phre­nia from society and is rooted in structural and socioeconomic conditions (Kelly 2005). A focus on individual risk f­ actors or be­hav­iors too often ends in blaming the victim (Farmer 2005), and the resulting levels of social stigma then serve as power­ful obstacles to prevention and care. As providers we need to work to improve the mediating social structures that provide care and social supports and community solidarity. As advocates we can work to effect legislative changes at the local, regional, and national levels and bring individuals together in working ­toward the concrete realization of community solidarity. Researchers can contribute to understanding how dif­fer­ent groups are able to mobilize resources and po­liti­cal support that ­will be critical to the ­future of every­one. Researchers must also balance analyses of efficiency and effectiveness with a consideration of the distribution of both the costs and benefits of health care—­that is, equity. In addition to providing evidence of health disparities, researchers can actively prioritize health equity and translate their findings to advocates and the wider public. We might even go further, seeking what Farmer (2005) calls “preferential justice”—­a system of care that sees the poor and disenfranchised as more, not less, deserving of care. This higher ethical ideal is consistent with a vision of community solidarity held by many communities—­both religious and secular.

Epilogue As we finish writing this book in August 2020, we wanted to consider what the ­future holds amid the COVID-19 pandemic for PSMH. ­Mental health is once again headline news, with daily reports of the m ­ ental health consequences of serious illness, social isolation, unemployment, and the stress of a very uncertain ­future. In addition to the COVID pandemic, we have an epidemic of anxiety, depression, substance use, and suicide. The numbers w ­ ill be outdated by the time the book goes to press, so we direct readers to the websites of the Kaiser F ­ amily Foundation, the Centers for Disease Control, the American Public Health Association, and ­Mental Health Amer­i­ca for updated information and statistics. SAMHSA authorized a distress line for suicide prevention, ­Mental Health Amer­i­ca has online tools for assessment and referral, and a national suicide prevention number was approved, though it ­will not start ­until 2022. M ­ ental health providers are even more overwhelmed than they ­were as we ­were writing this book, and many have moved to telehealth technologies to provide m ­ ental health care in the era of social distancing. We need to ask, how have t­ hose with the most serious and debilitating ­mental health prob­lems been faring? Not well. While we all understand more clearly than before the effects of stress and isolation on our ­mental health, t­ hose with more serious and chronic conditions are still marginalized and even more isolated. Social support programs have evaporated, case man­a g­ers work remotely, and social networks have grown even more exclusive. The social class divisions between communities and neighborhoods are even more apparent, as some have access to private golf clubs while public parks and playgrounds are shuttered. It is fine to shelter at home if you have a home, or some space in your home to escape to, or a yard, or even a balcony. Many ­people with serious ­mental health prob­lems do not have such private spaces and w ­ ere already socially 116

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isolated, as we saw in chapter 3. One can only imagine the effects of the kinds of restrictions on community COVID-19 has wrought for ­those experiencing severe depression, hearing voices, and having no one to reach out to. Some communities have brought resources to t­ hose who are homeless, including fresh ­water and masks, but such efforts are a drop in the bucket. We wondered, what is happening at the Oaks? On March 12, 2020, the participants and staff at the Oaks met for the last time due to the spread of the COVID-19 virus. While the mayor of the city instituted stay at home o­ rders about ten days l­ ater, leaders at the Oaks realized that they could not wait for the government to make decisions to protect the health of vulnerable participants. As the current executive director of the Oaks relayed: “Think about the ­things we do together. We eat together and congregate in smaller rooms. And we sing in ser­vices. We love to sing. It’s just not pos­ si­ble to be together right now.” The Oaks remains (as of August 2020) closed and is unlikely to open anytime soon. Most participants have been ­doing well, with no one becoming ill due to COVID-19. While surprising, the executive director explained, “It just shows you how isolated they are.” In the meantime, staff and volunteers at the Oaks are reaching out to participants to check in with them. Several days a week, dozens of bagged breakfasts and lunches are delivered to participants who need them. Th ­ ere are also efforts to maintain a sense of community amid social distancing. They include visits to group homes, hosting Bible studies outside, and allowing a few participants to come back to the art center or work in the garden. In some cases, for the more prolific artists, the Oaks had brought art supplies to them so that they could work on proj­ ects where they reside. While funding is increasingly problematic, the Oaks continues to work hard to provide a sense of community solidarity and belonging to t­ hose who are isolated and marginalized by their m ­ ental health prob­lems. ­There w ­ ill no doubt be many more bottom-up community efforts to deal with the multiple dislocations COVID-19 has produced. At the same time, the top-­down policy initiatives at the federal level are sorely lacking. The ­future of the Affordable Care Act and Medicaid remains uncertain. While the COVID pandemic is drawing attention to the need to invest in our public health care system and immunizations, l­ittle attention has been given to the necessary health and social supports required by chronic care populations. A glimmer of hope is seen with the protests over racial and economic in­equality and challenges to provide universal health care, sick leave, a living wage, unemployment benefits, affordable housing, and investment in education. We hope this awakened social consciousness leads to a more equitable society, and that ­those who have been marginalized by their ­mental disabilities are not forgotten.

Acknowl­edgments Writing a book is a journey, and this journey began many years ago when Drs. Scheid and Smith first began their respective research c­ areers. Dr. ­Virginia Aldige Hiday introduced Dr. Scheid to the sociology of ­mental health and has been not only a mentor but a very good friend. Drs. Ellen Idler and Molly Perkins served as advisers to Dr.  Smith and guided her research at the Oaks. David Mechanic, James Greenley, and Sue Estroff all conducted pathbreaking research at the University of Wisconsin at Madison on m ­ ental health, and their scholarship fueled our own inquiry. A very special thanks (and hugs) to the many individuals who let us explore the lived experience of community ­mental health care and shared their time, experiences, and stories with us. Peter Mickulas, executive editor at Rutgers University Press, has been supportive of the proj­ect from the beginning and is a plea­sure to work with. The external reviewers, Kerry Dobransky and Fred Markowitz, provided insightful critiques and suggestions that strengthened the book considerably. We are especially grateful for the discussion and commentary provided by gradu­ate students at the University of North Carolina at Charlotte, including Claire Cronin, Chloe Dunn, Maggie Gigler, Nicholas Lenhoff, Emily Mikkelson, Brittany Prioleau, Isaiah Roberts, and Jessica Willard. Th ­ ese students represent the diverse fields of counseling, public policy, social work, and sociology, and their insights into ­mental health care w ­ ere especially helpful as we revised the book. We know that they ­will go on to make a difference and incorporate some of our ideas about social justice into their own work.

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Notes Chapter 1  The Current Impasse over ­Mental Health Care 1 Originally published in the September issue of JAMA Network Open and reported in the November/December 2019 issue of The Nation’s Health, an American Public Health Association publication. The findings come from an analy­sis of National Vital Statistics System data. ­ ental health prob­lems 2 We ­will refer to ­those living with serious and/or chronic m simply as p­ eople with serious ­mental health issues or PSMH, in accordance with similar language used to refer to ­people living with HIV/AIDS as PLHA. Language itself can perpetuate stigma, which we hope to avoid. 3 Increased reliance on medi­cations is due in large part to aggressive direct to consumer advertising by phar­ma­ceu­ti­cal companies, who have realized rec­ord profits as a result. While not a topic of this book, ­there are many criticisms of the role of the phar­ma­ceu­ti­cal industry in medicalizing m ­ ental health treatment (Angell 2005; Light 2010). 4 This is how Donald Trump characterized the shooters following mass shootings in El Paso, Texas, and Dayton, Ohio, in September 2019. According to Joshua Sarfstein, M.D., director of the Bloomberg American Health Initiative at Johns Hopkins School of Public Health, “Science shows that the proximity of guns, not m ­ ental illness, is the driver of gun vio­lence” (www​.­apha​.­org​/­g un​-­violence; reported in The Nation’s Health, November/December 2019:3). ­ ental health care in the United 5 Historically, ­there have been two systems of m States: the private and the public. Public ­mental health care is funded primarily by Medicaid via federal and state partnerships and provides ser­vices primarily to ­those with serious ­mental illnesses. Private ­mental health care is funded by insurance or out of pocket. 6 Psychiatrists now refer to “anosognosia” or the “assumed” biologically based lack of insight individuals have into their need for treatment (Miller and Hanson, 2016). 7 Data from the National Institute of ­Mental Health, “­Mental Health by the Numbers,” August 2019, https://­w ww​.­nimh​.­nih​.­gov​/­health​/­statistics​/­mental​ -­illness​.­shtml. Unfortunately ­these statistics reflect long-­term patterns that simply 121

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8

9 10 11

12

13

have not been addressed, though scholars and advocates have brought the data to the attention of policy makers and the public for de­cades. For example, Christ Episcopal Church in Charlotte, North Carolina, created a Survivors of Suicide group ­a fter six suicides in five years among their 6,400-­member congregation (see www​.­faithandleadership​.­com​/­church​-­invests​ -­mental​-­health​-­response​-­parishioners​-s­ uffering, posted on July 9, 2019). https://­w ww​.­catholicsocialteaching​.­org​.­uk​/­themes​/­solidarity​/­, retrieved September 15, 2018. This is not the ­actual name of the faith-­based organ­ization, but it does provide ser­vices for chronically mentally ill persons in the Atlanta metropolitan area. This framework is very common in public health and is evident in the Social Ecological Model (Centers for Disease Control and Prevention 2015), which places individuals within a circle of relationship within a given community within a given society. Anthony Giddens used the concept of enablement in describing the relationship between ­human agency and social structure, arguing that “structures must not be conceptualized as simply placing constraints on h ­ uman agency, but as enabling (1976, 161), as cited in Sewell 1992. “Resilience” is a term that has become dominant in many areas of research, and has a more psychological focus on the ability to bounce back in the face of adversity (B. Smith et al. 2010). Thoits (2011b, 11) views resiliency as maintaining a steady equilibrium in the face of adversity, and consequently as an outcome of the use of re­sis­tance strategies.

Chapter 2  Looking Back 1 The reader should understand that I am critical of discrete psychiatric diagnoses and the attribution of ­mental disorders to biochemical sources. 2 I ­will continue to use the acronym PSMH, but during the 1970s the term “chronically ­mental ill” (CMI) was used; in the 1980s the preferred term was “seriously, per­sis­tently mentally ill” (SPMI), then “clients or consumers” became the more common reference, with many researchers also using CMI or SPMI. I like the use of “clients” to refer to individuals in care, but I have never liked the use of “consumers,” as that implies some choice about care, as well as the ability to refuse care. 3 Megan also found participants to be very grateful for the l­ ittle rewards she could offer in her research. 4 The response rate in 1998 was 56.6 ­percent (N = 51), and it was 49 ­percent (N = 46) in 2000. The majority of respondents w ­ ere female (76 ­percent in 1998 and 70 ­percent in 2000), white (64 ­percent in 1998 and 60 ­percent in 2000), and had a master’s degree, generally the MSW (25 ­percent in 1998 and 33 ­percent in 2000); about a fourth of the respondents w ­ ere nurses (22 ­percent in 1998 and 26 ­percent in 2000).

Chapter 3  Being a “Right Person” 1 The Oaks is a pseudonym. Information on the history and development of the Oaks was obtained from interviews with the former vicar. 2 ­There are some terminological nuances to digest; psychologists generally refer to personality, social psychologists to identity. Self, or selfhood, is the term used by

Notes • 123

G. H. Mead to refer to the idea that individuals have a self. We generally use the concept “self ” to focus on how we perceive ourselves (i.e., Who am I?), which is core to ideas about identity. 3 ­There is some fascinating theorizing about the nature of the world experienced by individuals alleged to be schizophrenic; the delusionary world may be a source of enlightenment, or it may not have been recognized by o­ thers (Sass 1994, 24). Many prophets have pointed society ­toward a new world on the basis of their visons.

Chapter 5  Us and Them 1 ­There is a dearth of research on the aging of PSMH. 2 Readers might enjoy a book published by Rutgers University Press, Smoking Privileges: Psychiatry, the Mentally Ill, and the Tobacco Industry in Amer­i­ca, by Laura D. Hirshbein. 3 Readers are directed to an excellent analy­sis of workplace stress provided by M ­ ental Health Amer­i­ca, called Mind the Workplace, which was published in 2017 with assistance from the Faas Foundation. The report is based upon survey data and contains recommendations for improving workplace environments so as to maximize ­mental health.

Chapter 6 ­Going Backward 1 Dr. Scheid lived in Wisconsin during part of its period of reform and was involved with the ­earlier recommendations of the Blue Ribbon Commission, but we rely upon Jacobson’s (2004) excellent account of that state’s reform. 2 Information on the reform movement in North Carolina is a result of Dr. Scheid’s involvement with the North Carolina ­Mental Health Association, and from information made available to m ­ ental health ser­vices researchers at a series of seminars and pre­sen­ta­tions. She also conducted an evaluation of the planning pro­cess for one of the area authorities.

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Index advocacy, 12–13, 63, 86, 104, 107–111, 115 Affordable Care Act (ACA), 89, 93, 101 Americans with Disabilities Act (ADA), 70, 114

Goffman, Erving, 4, 22, 49–50

bonding/bridging ties, 46–47, 52–55, 59–60, 62, 64–65

identity, 36, 43–45, 47–51, 55, 65 institutionalization, 4, 20, 31, 43, 57–58, 61, 65 institutions, 22–23, 37–38

capabilities/capacities, 77, 107 case management/case man­ag­ers, 25–27, 29–30, 79–80, 83–84 club­houses, 71–74, 106–107 commitment, involuntary, 21–24, 37–38, 97 community integration, 3–4, 19, 24–27, 38–39, 93–94, 105 Community ­Mental Health Centers Act, 19–21 community support programs, 25–27, 69–70, 98–100 deinstitutionalization, 17, 19–21, 37, 64 Durkheim, Emile, 53, 107 education, 56, 59, 61, 75 employment, 41–43, 46, 55–56, 59, 76–77 empowerment, 40, 63–65, 111 enclave communities, 26, 37–40 Estroff, Sue, 40, 47, 54, 64 expressed emotion, 73 faith-­based programs, 36, 38–40, 44, 64, 76 financing, 20, 41, 43, 53, 55, 73

homelessness, 5, 77–78 housing, 21, 26, 36–38, 41, 44–45, 53, 55

legislation, 5–6, 14–15, 87, 89–97 managed care, 5, 28–30, 98, 100 marginalization, 24, 39, 47, 49–50, 52–53, 55–57, 59–60, 64, 75 mediating structures, 11, 74–75, 107–111, 113 Medicaid, 98–99, 101, 112 medicalization, 110 medi­cation, 19, 33–35, 74, 81 ­Mental Health Amer­i­ca (MHA), 94–95 Mills, C. W., 11–12, 113 National Alliance on ­Mental Illness (NAMI), 32, 62–63, 65, 82, 89–90, 101 National Institute of M ­ ental Health (NIMH), 17, 20, 23, 27 network activation/network ties, 53–55, 57–58, 60–61, 65 normalization, 49, 67–68, 184 peer supports, 10–11, 67, 79–82, 92–94, 110–111 providers, 17, 21, 38–40 135

136  •  Index

quality/quality of care, 28, 31–32, 111–112 recovery, 6–8, 32–35, 39, 63, 97–100 reform, 86, 104–105 religion, 36, 38–39, 40, 43–48, 51–52, 60–61, 64–65, 75–76, 105–107 Robert Wood Johnson Program on Chronic M ­ ental Illness, 25–28 schizo­phre­nia, 49, 56, 59 social control, 22–23, 102 social justice, 37, 41, 47, 115

social support, 13–14, 21, 34–35, 36–40, 42–44, 46–47, 53–54, 58, 63 solidarity, 3, 9–10, 47, 51, 75–76 stigma, 38–39, 48–50, 55, 57, 60, 63, 68–69, 84, 112–114 stress, 52–54, 73–74 Surgeon general’s report on ­mental health, 87, 97 treatment ideology, 27, 29, 31–32, 38 vio­lence, 45, 62, 113 volunteerism, 10, 105

About the Authors is a full professor in the Department of Sociology at the University of North Carolina at Charlotte with joint appointments in health psy­ chol­ogy, public policy, and health ser­vices research. She has published widely on the organ­ization and delivery of m ­ ental health ser­vices and the work of ­mental health, including the 2004 book Tie a Knot and Hang On: Delivering ­Mental Health Care in a Turbulent Environment. Her 2015 book Comprehensive Care for HIV/AIDS: Community-­Based Strategies focused on community-­ based initiatives designed to integrate diverse systems of care for minority groups living with HIV/AIDS. Dr. Scheid is se­nior editor (with Eric Wright) of the third edition of A Handbook for the Study of ­Mental Health: Social Contexts, Theories, and Systems (2017, with the first edition published in 1999 with Allan Horwitz as se­nior editor). Dr. Scheid’s most recent book, Reducing Race Differences in Direct-­to-­Consumer Phar­ma­ceu­ti­cal Advertising: The Case for Regulation, was coauthored with a former doctoral student, Stephany De Scisciolo, and based on her dissertation. Dr. Scheid has also examined the impact of a number of legislative mandates, including outpatient commitment and the Americans with Disabilities Act, and is currently analyzing state-­level legislative reforms to m ­ ental health care. TERESA L. SCHEID

earned her PhD in sociology in 2017 from Emory University and her MA in sociology from the University of North Carolina at Charlotte. Her dissertation, entitled “Enhancing Choice, Capabilities, and Community for Chronically Mentally Ill Persons: The Social Context of a Faith-­Based Day Program,” is based on an ethnographic case study. This work primarily explored the social relationships of participants with other participants, volunteers, and staff members and found that chronically mentally ill persons w ­ ere able to develop meaningful relationships with o­ thers. Smith also identified that

S. MEGAN SMITH

138  •  About the Authors

participants at the program maximized their capabilities through the volunteer and employment opportunities at the program. In addition to her research, she was awarded the Andrew Mellon Teaching Fellowship during her tenure at Emory and taught ­mental health and research methods courses at Clark Atlanta University. Currently, she is a full-­time adjunct lecturer at UNC Charlotte in the Sociology Department, where she teaches courses in m ­ ental health, medical sociology, and criminology.