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The Palgrave Handbook Of American Mental Health Policy
 3030119076,  9783030119072

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The Palgrave Handbook of American Mental Health Policy Edited by Howard H. Goldman · Richard G. Frank Joseph P. Morrissey

The Palgrave Handbook of American Mental Health Policy

Howard H. Goldman · Richard G. Frank · Joseph P. Morrissey Editors

The Palgrave Handbook of American Mental Health Policy

Editors Howard H. Goldman University of Maryland School of Medicine Baltimore, MD, USA

Richard G. Frank Department of Health Care Policy Harvard Medical School Boston, MA, USA

Joseph P. Morrissey Cecil G. Sheps Center for Health Services Research University of North Carolina at Chapel Hill Chapel Hill, NC, USA

ISBN 978-3-030-11907-2 ISBN 978-3-030-11908-9  (eBook) Library of Congress Control Number: 2018968258 © The Editor(s) (if applicable) and The Author(s) 2020 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover credit: Ekely/Getty Images This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland


The history of mental health policy has been characterized by a series of cycles of fundamental reform, each followed by a period of incremental gains. The nineteenth-century moral treatment movement gave rise to the asylum. The mental hygiene movement of the turn of the twentieth century led to the development of small inpatient units and outpatient services in academic medical centers. Community mental health centers were introduced by a reform movement in the 1960s, which also brought us Medicare and Medicaid. And a community support movement in the 1970s and 1980s shifted the focus from the early treatment of mental illnesses to providing support for individuals already disabled by mental disorders. What might look like retrenchment to the fundamental reformers can look like slow progress to those on the ground. A sequence of incremental changes can bring progress, even in conservative times. At this point in time, as we find ourselves immersed in the uncertainty about the future of health reform and the place of behavioral health within it, there are many questions for mental health policy. This handbook explores those questions and issues in the United States. Mental health policies seek to coordinate essential services for those in need and to promote efficiencies in the system of care and treatment. Once formulated, policies and plans change through implementation successes and failures, evolving understandings of mental illness and its proper treatment, as well as developments in the broader political, economic, and social environment. This handbook does not subscribe to a general theory of history or policy change, but our experience tells us that there are repeating v

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patterns of change. Progress in mental health policy occurs in a sequence of incremental changes guided by a larger vision of more fundamental reform. The Handbook of American Mental Health Policy is organized into four parts as described below.

Part I—Foundations of American Mental Health Policy This part of the handbook presents three chapters setting forth some basic constructs, organizational features, and forces that have shaped mental health policy in the United States. The chapters combine perspectives from history, sociology, and economics intertwined with policy analyses as a foundation for the rest of the handbook. Howard H. Goldman and Joseph P. Morrissey (Chapter 1) lead off with a review of the history of major reform cycles in the care and treatment of mentally ill persons in the United States, distinguishing between fundamental reforms and incremental gains. Although policy dynamics over the past few decades have prefigured incipient elements of new reform cycles, current uncertainty about the future shape of health care in the United States and the place of behavioral health within it, suggest that policy makers in the next decades will be challenged to sustain recent incremental advances in mental health care. What has led to the current configuration of mental health services and policies in the United States? Joseph P. Morrissey and Howard H. Goldman (Chapter 2) address this question with an in-depth analysis of developments since WW II encompassing the shift in care from state mental hospitals to our current decentralized mix of inpatient and outpatient services operated under private as well as public auspices. Resulting more from policy developments in the health and social welfare sectors than from the mental health services sector itself, these changes led to fragmentation of responsibilities for both mental health services and policy initiatives. Efforts that have attempted to reintegrate the system of care are highlighted and discussed. Our understandings of policy dynamics in mental health as in other domains are enhanced by economic assessments. Richard G. Frank and Sherry A. Glied (Chapter 3) apply a public economics perspective to American mental health policy which has been concerned with finding the right balance between the private and public sectors; determining the appropriate role for federal, state and local government; and deciding when

Preface     vii

mental health policy should fall within the mainstream of health policy and when it should be treated in an exceptional way. The resulting tensions and debates set the stage for the further evolution of mental health policies in the decades ahead.

Part II—Contemporary Issues in Mental Health Policy: Treatment Interventions and Services This part includes nine chapters that focus on various aspects of policy related to the content and delivery of mental health services. Each of the chapters in this part and the next is organized under four headings: framing the issue, questions, evidence, and conclusions. The intent is to provide a consistent framework for each of these chapters that allows for clarity of focus and easy comparison of evidence and policy issues. The framing part is particularly important as each chapter topic is amenable to a variety of viewpoints and understandings. Rather than conduct an encyclopedic review of these many dimensions, we have asked our contributors to be selective in “framing” the particular approach or issue addressed in their commentary. Then, the chapters follow a common course of identifying key questions that flow from the chosen frame, reviewing evidence that suggests answers to these questions, and drawing conclusions about where things now stand and some policy directions for future attention. Larry Davidson and Timothy Schmutte (Chapter 4) open this part with a review and assessment of the meaning and process of recovery, one of the central aspirations that has emerged from and guided the mental health consumer movement over the past few decades. Evidence suggests that persons with serious mental illnesses can function in a range of valued social roles and are more likely to do so when provided person-centered care that promotes self-management. Patricia A. Areán and Anna Ratzliff (Chapter 5) address one of the paramount questions in current psychiatric and clinical practice for people with a serious mental illness—how can we balance the use of medications and psychosocial treatments? Despite a noted patient preference for psychosocial treatments people receiving mental health care in the United States are more likely to be treated with medications than they are with psychosocial treatments. Recommendations to policymakers in the United States are focused on ensuring that patients with mental health challenges are guaranteed access to the treatments they need and prefer.

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The message in many media commentaries about today’s mental health system in the United States is that more psychiatric beds are needed. Eric Slade and Marisa Elena Domino (Chapter 6) examine this assertion from both historical and health economics perspectives. Key issues and controversies are explored surrounding whether the current psychiatric inpatient bed supply is adequate or alternatively whether more psychiatric beds are needed. The answer turns upon region by region analyses of bed supply, community-based functional alternatives for inpatient care, and the effects of professional shortages. Simulation modeling may also help fill gaps in our current understanding of the need for added bed capacity. Marvin S. Swartz and Jeffrey W. Swanson (Chapter 7) review one of the most vexing questions in mental health policy: What to do about adult members of our communities who suffer from debilitating psychiatric illnesses such as schizophrenia but fail to receive consistent and effective treatment. In particular, they focus on the case for involuntary treatment on an outpatient basis for individuals who do not meet the evidentiary test for commitment to a hospital because of dangerousness or grave disability. In what ways can individuals with significant mental impairments participate in decisions related to their own care? Michelle P. Salyers and Yaara Zisman-Ilani (Chapter 8) explore this question. They present the evidence to support the use of two innovative techniques, shared decision-making and self-directed care. The key issue for mental health policy with respect to these techniques is how to balance respect for the preferences and autonomy of service users and the expertise of clinicians and service providers. Suicide rates in the United States are rising and our investment in intervening and preventing this public health problem has not kept pace. Michael F. Hogan (Chapter 9) presents the evidence on patterns of suicide and approaches to address and prevent suicide and suicidal behavior. Further, he suggests policy challenges to reverse the trends in self-inflicted injury and death. Opioid overdose and abuse in America have reached epidemic proportions, and they challenge policy makers to reverse this contemporary scourge. Keith Humphreys and Harold A. Pollack (Chapter 10) discuss the ways in which the healthcare system is critical to the public policy response, both because of the services it can provide people with opioid use disorder and the changes in clinical practice it must make to prevent new cases of addiction. Thomas E. Smith and Lisa B. Dixon (Chapter 11) review the recent history and evidence in support of early interventions for first episode psychosis. Current evidence shows short- and medium-term quality of life

Preface     ix

improvements but, as yet, uncertain longer-term effects in preventing disability. Policy issues surrounding the promise and sustainability of these interventions are identified and discussed. Jeanne Miranda, Lonnie R. Snowden, and Rupinder K. Legha (Chapter 12) address mental health and mental health services disparities for various minority and vulnerable populations. While immigrants and members of some ethnic minorities may have fewer mental health problems than the mainstream population, those who need treatment and care may experience disparities in access and use of services. The authors explore these issues for members of ethnic, racial, and sexual subgroups in the population and discuss some of the policy challenges for addressing these disparities in mental health services.

Part III—Contemporary Issues in Mental Health Policy: Crossing Sectors and Populations This part presents eight chapters on topics reflecting the wider system influences that shape mental health policy and care. Here, the multiple intersections of mental health with other aspects of social policy are considered, ranging from health insurance, housing, employment, education, and criminal justice. Haiden A. Huskamp (Chapter 13) assesses where we now stand with regard to regulating equitable health insurance benefits for people with serious mental illness relative to other medical conditions. The lodestone event in this saga was the enactment of the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008, the federal law requiring parity in coverage for mental health and substance use disorder (MH/SUD) services and medical/surgical services offered in group health insurance plans. This chapter discusses market failure in insurance, its history and the effects of parity and related policies on correcting these problems and those that remain for MH/ SUD services. Josh Leopold (Chapter 14) describes what we know about the housing situations of people with serious mental illness, the challenges they face in the rental housing market, and the effectiveness of different program models for providing housing and services. More than 90% live in the community and not in institutions or specialized programs. Yet, the lack of affordable housing, discrimination in the rental market, difficulties accessing community-based health services, and insufficient benefits still contribute to their being at greater risk for homelessness, inadequate or unaffordable housing, or incarceration.

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Impacts from mental illness are debilitating for children, their families, and their communities. As Sharon A. Hoover, Jeff Q. Bostic, and Libby K. Nealis (Chapter 15) discuss, comprehensive school mental health can provide services for all children, while supporting the school’s broader mission of improving academic outcomes and reducing disruptive behavior and suspensions. However, school mental health sustainability necessitates coordinated funding across multiple systems and payers, including health, mental health, education, special education, and public (Medicaid) and private insurance. Robert E. Drake, Ellen R. Meara, and Gary R. Bond (Chapter 16) address three critical policy questions related to employment for the ten million working-age adults with severe mental illness (SMI): First, do disability policies influence the low rate of employment among people with SMI? Second, could policy changes improve employment of people with SMI? Third, could policy changes enhance access to supported employment? No consensus exists yet on what the answers should be. Although disability policy changes are uncertain, evidence-based supported employment is an effective strategy that could help people with SMI acquire and maintain employment. But the United States needs a simple mechanism to fund evidence-based supported employment. Fred Osher and Michael Thompson (Chapter 17) explore why so many adults with mental illness are arrested and incarcerated, what is different about this problem today than years ago, how much recent progress has been realized, and what challenges must be addressed in the years ahead to make fundamental change. The chapter ends with a description of promising national initiatives that build on the accomplishments to date with the express purpose of reducing the number of adults with serious mental illnesses under correctional supervision. Jeffrey W. Swanson, Colleen L. Barry and Marvin S. Swartz (Chapter 18) address three pressing policy questions: How are gun violence and mental health problems connected (or not connected)? How effective are current laws designed to prevent firearm-related violence and suicide in the United States? What other feasible measures could be taken to meaningfully reduce the number of firearm injuries and deaths, without stigmatizing people with mental illnesses or unduly curtailing the rights of law-abiding gun owners? Expert consensus recommendations on selected policies to reduce gun violence and suicide are discussed. Perhaps there is no more contested phenomenon in mental health policy debates than stigma. Bernice A. Pescosolido (Chapter 19) describes the strengths and weaknesses of stigma change strategies and novel results

Preface     xi

from recent experimental research on messages. Remaining challenges that confront the design and implementation of stigma reduction efforts are considered. Michael Rowe and Allison N. Ponce (Chapter 20) examine citizenship as a framework for understanding and enhancing the strength of a person’s connection to the rights, responsibilities, roles, resources, and relationships that society offers to its members, as well as a sense of belonging that is validated by fellow citizens. They review their own approaches to support citizenship and community engagement for individuals with mental illness and other marginalized identities and highlight the supporting evidence. Future directions are also discussed for the development of the citizenship framework as a means of promoting the social inclusion, participation, and valued membership in society of people with mental illness.

Part IV—Future Issues in Mental Health Policy The final Handbook part looks ahead beyond the horizon of today’s mental health policies to issues that will be particularly salient in the next decade. Although the issues addressed in these three final chapters touch upon themes introduced in earlier parts of the handbook, they offer important new insights into evidence-based practices, financing, and employment prospects for people with severe mental disorders. These chapters ask some fundamental questions and present some compelling ideas about future challenges for American mental health policy. Marcela Horvitz-Lennon (Chapter 21) focuses on the research-to-practice gap that has created a quality chasm for people with serious mental illnesses. Namely, although multiple evidence-based practices are available for the treatment of behavioral disorders, these interventions are not consistently delivered in routine care in the U.S. Barriers to quality care are described in detail and strategies to address them are discussed as a way to develop new models growing out of effective practice. Financing and its associated incentives and disincentives are fundamental levers for policy stimulation and change. Thomas G. McGuire (Chapter 22) focuses on innovations that group services together for purposes of payment, such as shared-risk contracts and pay-for-performance contracts. His analysis emphasizes the importance of getting bundling right at a high level: paying private managed care plans, responsible for providing care to persons with behavioral health issues in the United States in Medicare, Medicaid, and

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some private health insurance, in a way that encourages them to accept and serve persons with chronic illnesses. The potential for bundling in critical areas of behavioral health care including early interventions in psychosis are considered. Sherry A. Glied, Richard G. Frank, and Joanna Wexler (Chapter 23) address workforce participation for individuals with severe mental disorder in a changing workplace of the future. They point out that future employment opportunities for individuals with significant mental impairments may be more limited than in the present. Jobs of the future are likely to require skills and functions, such as social interaction and cognitive flexibility, which are challenged directly by mental disorders. They discuss the employment and rehabilitation policy challenges for the future to promote social integration for individuals with mental disorders. This Preface is intended as a guide for readers not a fixed roadmap. While we encourage readers, particularly students in courses in health and mental health policy, to begin with the three foundational chapters, The Handbook of American Mental Health Policy may be read selectively in any order. The handbook provides a conceptual basis for examining mental health p ­ olicy and presents thorough explorations of some of the most interesting and challenging questions in the field. Many of the chapters can be read as self-contained policy statements not dependent upon assessments presented in other chapters. Whatever the sequence in which the Handbook’s contents are viewed, we hope that the ideas and perspectives analyzed here will be both informative and engaging for a new generation of mental health p ­ olicy makers and scholars seeking pathways to shape American mental health policy in the years ahead. Baltimore, USA Boston, USA Chapel Hill, USA

Howard H. Goldman Richard G. Frank Joseph P. Morrissey


Part I  Foundations of American Mental Health Policy 1

Mental Health Policy: Fundamental Reform or Incremental Change? 3 Howard H. Goldman and Joseph P. Morrissey


Division of Labor: Function Shifts and Realigned Responsibilities in the Evolving Mental Health Services System 21 Joseph P. Morrissey and Howard H. Goldman


Economic Perspectives on the Organization and Governance of Mental Health Care 49 Sherry A. Glied and Richard G. Frank

Part II Contemporary Issues in Mental Health Policy: Treatment Interventions and Supports 4

What Is the Meaning of Recovery? 71 Larry Davidson and Timothy Schmutte


Balancing Access to Medications and Psychosocial Treatments 101 Patricia A. Areán and Anna Ratzliff xiii

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Are There Enough Inpatient Psychiatric Beds? 129 Eric Slade and Marisa Elena Domino


Mandated Community Treatment in Services for Persons with Mental Illness 171 Marvin S. Swartz and Jeffrey W. Swanson


Shared Decision-Making and Self-Directed Care 197 Michelle P. Salyers and Yaara Zisman-Ilani


Suicide Prevention: Rising Rates and New Evidence Shape Policy Options 229 Michael F. Hogan

10 How Should the United States Respond to the Opioid Addiction and Overdose Epidemic? 259 Keith Humphreys and Harold A. Pollack 11 Early Intervention in Psychosis: From Science to Services 297 Thomas E. Smith and Lisa B. Dixon 12 Policy Effects on Mental Health Status and Mental Health Care Disparities 331 Jeanne Miranda, Lonnie R. Snowden and Rupinder K. Legha Part III Contemporary Issues in Mental Health Policy: Cross Sectors and Populations 13 Mental Health Insurance Parity: How Full Is the Glass? 367 Haiden A. Huskamp 14 Housing for People with Serious Mental Illness 389 Josh Leopold 15 What Is the Role of Schools in the Treatment of Children’s Mental Illness? 409 Sharon A. Hoover, Jeff Q. Bostic and Libby K. Nealis

Contents     xv

16 Policy Issues Regarding Employment for People with Serious Mental Illness 449 Robert E. Drake, Ellen R. Meara and Gary R. Bond 17 Adults with Serious Mental Illnesses Who Are Arrested and Incarcerated 471 Fred Osher and Michael Thompson 18 Gun Violence Prevention and Mental Health Policy 509 Jeffrey W. Swanson, Colleen L. Barry and Marvin S. Swartz 19 Stigma as a Mental Health Policy Controversy: Positions, Options, and Strategies for Change 543 Bernice A. Pescosolido 20 How Shall We Promote Citizenship and Social Participation? 573 Michael Rowe and Allison N. Ponce Part IV  Future Issues in Mental Health Policy 21 Evidence-Based Practices or Practice-Based Evidence: What Is the Future? 603 Marcela Horvitz-Lennon 22 New Financing Models in Behavioral Health: A Recipe for Efficiency or Under-Provision? 639 Thomas G. McGuire 23 Mental Health Disability, Employment, and Income Support in the Twenty-First Century 659 Sherry A. Glied, Richard G. Frank and Joanna Wexler Index 679


Patricia A. Areán  Department of Psychiatry and Behavioral Sciences, UW ALACRITY Center, University of Washington, Seattle, WA, USA Colleen L. Barry Department of Health Policy and Management, Johns Hopkins University, Bloomberg School of Public Health, Baltimore, MD, USA Gary R. Bond  Westat Corporation, Rockville, MD, USA Jeff Q. Bostic  Department of Psychiatry, MedStar Georgetown University Hospital, Washington, DC, USA Larry Davidson  Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA Lisa B. Dixon  New York State Psychiatric Institute, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA Marisa Elena Domino Department of Health Policy and Management, Gillings School of Global Public Health and Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, NC, USA Robert E. Drake  The Dartmouth Institute on Health Policy and Clinical Practice, Lebanon, NH, USA; Westat Corporation, Rockville, MD, USA Richard G. Frank Department of Health Care Policy, Harvard Medical School, Boston, MA, USA


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Sherry A. Glied Robert F. Wagner Graduate School of Public Service, New York University, New York, NY, USA Howard H. Goldman University of Maryland School of Medicine, Baltimore, MD, USA Michael F. Hogan Clinical Professor of Psychiatry, School of Medicine, Case Western Reserve University, Cleveland, OH, USA Sharon A. Hoover Department of Psychiatry, University of Maryland School of Medicine, Baltimore, MD, USA Marcela Horvitz-Lennon Pardee RAND Graduate School, RAND Corporation, Boston, MA, USA; Cambridge Health Alliance/Harvard Medical School, Boston, MA, USA Keith Humphreys Veterans Affairs and Stanford University Medical Centers, Palo Alto, CA, USA Haiden A. Huskamp  Department of Health Care Policy, Harvard Medical School, Boston, MA, USA Rupinder K. Legha  Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, CA, USA Josh Leopold  Metropolitan Housing and Communities Policy Center, The Urban Institute, Washington, DC, USA Thomas G. McGuire  Department of Health Care Policy, Harvard Medical School, Boston, MA, USA Ellen R. Meara The Dartmouth Institute on Health Policy and Clinical Practice, Lebanon, NH, USA Jeanne Miranda Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, CA, USA; Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, CA, USA Joseph P. Morrissey  Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA Libby K. Nealis  School Social Work Association of America, London, KY, USA Fred Osher  The Council of State Governments Justice Center, New York, NY, USA

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Bernice A. Pescosolido Indiana Consortium for Mental Health Services Research, Indiana University, Bloomington, IN, USA Harold A. Pollack  School of Social Service Administration, The University of Chicago, Chicago, IL, USA Allison N. Ponce  Yale School of Medicine, New Haven, CT, USA Anna Ratzliff Department of Psychiatry and Behavioral Sciences, AIMS Center, University of Washington, Seattle, WA, USA Michael Rowe  Yale School of Medicine, New Haven, CT, USA Michelle P. Salyers Department of Psychology, School of Science, ACT Center of Indiana, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA Timothy Schmutte Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA Eric Slade  Johns Hopkins University, School of Nursing, Baltimore, MD, USA Thomas E. Smith New York State Psychiatric Institute, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA Lonnie R. Snowden  Health Policy and Management Division, School of Public Health, University of California, Berkeley, CA, USA Jeffrey W. Swanson Division of Social and Community Psychiatry, Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA Marvin S. Swartz Division of Social and Community Psychiatry, Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA Michael Thompson  The Pew Charitable Trusts, Philadelphia, PA, USA Joanna Wexler  Robert F. Wagner Graduate School of Public Service, New York University, New York, NY, USA Yaara Zisman-Ilani College of Public Health, Temple University, Philadelphia, PA, USA

List of Figures

Fig. 2.1 Fig. 2.2 Fig. 6.1 Fig. 6.2 Fig. 6.3 Fig. 6.4 Fig. 8.1 Fig. 10.1 Fig. 10.2 Fig. 15.1 Fig. 17.1 Fig. 18.1 Fig. 18.2 Fig. 18.3

Resident patients in state and county psychiatric hospitals: 1950–2014 24 State Mental Health Authority (SMHA) controlled expenditures for state psychiatric hospital inpatient and community-based services as a percent of SMHA Expenditures 28 Number of state and county psychiatric resident patients (end-of-year) and annualized percent reductions: 1955–2013 134 Psychiatric inpatient beds per capita in US non-federal hospitals: 1970–2014 135 IPF occupancy rates (%) by hospital type, 1970–2016 149 Projected future trends in IPF and non-IPF general hospital spending by hospital type 151 Patient-centered care, SDM, and self-directed care 199 Overdose deaths involving opioids, United States, 2000–2016 260 Top 30 prescription opioid consuming nations, in standard daily doses/million inhabitants 276 The School Health Assessment and Performance Evaluation (SHAPE) System ( 425 Framework to differentiate treatment and supervision needs for corrections populations 485 Annual rate of firearm-related fatalities in each state, by mental health and firearm-related characteristics of each state in 2015 517 U.S. firearm deaths per 100,000 populations, by age and sex: annual rates average, 1999–2015 519 Suicide deaths and homicide perpetration by age and sex: crude rates per 100,000 population in U.S., 2010 519


xxii     List of Figures

Fig. 18.4 Predicted probability of any minor or serious violent behavior towards others in 12 months in a community-based sample of lower-socioeconomic status males aged 18–44, with and without major psychiatric diagnoses and substance abuse comorbidity, by history of psychiatric hospitalization and arrest 521 Fig. 19.1 Stigma concepts, types, targets, and interventions 545 Fig. 19.2 a–c Adjusted stigma findings from the U.S. National Stigma Study—Replication (NSS-R) 551

List of Tables

Table 2.1 Table 6.1 Table 14.1 Table 14.2 Table 15.1 Table 18.1 Table 19.1 Table 19.2 Table 22.1

Percent distribution of US inpatient and outpatient episodes of care by type of mental health services organization: 1955 and 1994 30 Inpatient beds in specialty psychiatric care settings in the United States, 2016 145 Housing conditions of all renter households compared to renter households where one or more members have a cognitive limitation 394 Housing situations of people with severe mental illness 396 Overview of common funding streams for school mental health 435 Percent of public supporting risk-based firearm policy proposals in 2017, by gun ownership status 533 Percentage of Americans reporting they are “definitely” or “probably unwilling” to interact with vignette person 548 The failed eleven myths of stigma reduction and change targets 554 Payment weights for Medicare bundled payments for mental health disorders 653


Part I Foundations of American Mental Health Policy

1 Mental Health Policy: Fundamental Reform or Incremental Change? Howard H. Goldman and Joseph P. Morrissey

1.1 Introduction This handbook is shaped by a basic set of questions and ideas about mental health policy. At the outset, two questions are paramount. First, what do we mean by mental health policy? And, second, how does mental health policy change over time in response to activities within the mental healthcare system and within the context of broader social and political forces? A dictionary definition of policy refers to high-level plans or formulations to set forth and implement a particular set of goals or objectives. Policy includes laws and court decisions, regulations and guidelines, particularly those developed within the public sector, but also in some instances within the private sector. In the case of mental health policy the World Health Organization refers to “the vision for the future mental health of the population, specifying the framework that will be put in place to manage and prevent priority mental and neurological disorders.” Such plans are designed to affect the life outcomes for individuals who experience a mental disorder. According to a conceptual approach to social policy developed by David Gil [1], these H. H. Goldman (*)  University of Maryland School of Medicine, Baltimore, MD, USA J. P. Morrissey  Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


4     H. H. Goldman and J. P. Morrissey

policies focus on the division of labor within a field of interest, the distribution of rights to individuals, and the allocation of scarce resources. Mental health policies seek to coordinate resources and essential services for those in need or to create incentives to improve outcomes or to promote efficiencies in the system of care and treatment. To do so mental health policy requires a plan that lays out a detailed scheme to implement the policy vision and objectives, identifies targets to be achieved, and specifies the roles of various stakeholders in the implementation process. The title of this chapter refers to two of our core ideas: fundamental reform and incremental change. By fundamental or radical reform we refer to a far-reaching set of principles designed to change the basis for addressing policy in mental health. These principles usually have a strong driving force and affect a wide array of policy areas, such as the division of labor, rights, and resources. Fundamental reform is said to be transformational and sweeping. Incremental change stands in contrast to fundamental or radical change in the narrowness of its scope and likely effects. Incremental changes are taken one step at a time and usually fall within the scope of a larger vision of policy and practice. This handbook does not subscribe to a general theory of history or policy change, but our experience tells us that there are repeating patterns of change. Once formulated, policies and plans change through implementation successes and failures, evolving understanding of mental illness and its proper treatment, as well as changes in the broader political, economic, and social environment. A review of the history of mental health policy and careful observation of the evolution of policies on mental health services over the past four decades both suggest that there is meaning in the patterns of reform. It is instructive to examine these patterns to understand how policy changes and how we might do a better job of making policy in the future. That is the focus of this initial handbook chapter. In the Prologue to their book on federal mental health policy, Grob and Goldman wrote: “History, of course, never quite repeats itself, nor are its ‘lessons’ self-evident. Nevertheless, we live with the results of earlier policies. To be sure, much has changed, yet we continue to hear the same dissatisfaction and laments” [2, p. 12]. This chapter examines some familiar patterns that are described in more detail in the other chapters in the handbook.

1.2 Cycles of Reform In a series of publications [3–5] based on the seminal research of Gerald Grob [6, 7], beginning in 1980, Howard Goldman and Joseph Morrissey described several cycles of reform in mental health services policy.

1  Mental Health Policy: Fundamental Reform or Incremental Change?     5

The cycles, beginning in the first half of the nineteenth century, followed a recurrent pattern with a focus on policies designed to treat mental illness early in its course in an effort to prevent acute conditions from becoming chronic and disabling. Each turn of the cycle was motivated by a grand theory of fundamental reform promising to prevent chronic mental illness through early treatments provided in newly developed treatment settings. Each time the proposed theory foundered on the limitations of the treatment technology to make good on the promises of early intervention. As a result, in each reform cycle, mental health policies ended up focusing on administrative details and incremental changes, rather than on fundamental reform and comprehensive system transformation. Three of the reform cycles occurred roughly over the 100-year period spanning pre-Civil War reform movements in the mid-nineteenth century to the Progressive era at the turn of the twentieth century through to the post-World War II years: They were the moral treatment era of the asylums, the mental hygiene movement of psychopathic hospitals and clinics, and the community mental health center reforms. Early nineteenth-century reformers proposed that moral treatment offered early in the course of a mental illness, delivered in newly developed asylums, would eliminate the need to care for disabled individuals at home or in undifferentiated institutions, such as jails, workhouses, and poorhouses. Initial enthusiasm led to a period of asylum building throughout the nineteenth century in the United States, but by the time of Reconstruction in the 1870s, States had already begun admitting the defeat of the radical reform strategy when they began building ever-larger institutions, including some intended only for long-stay, chronic patients, who never left those hospitals alive [3–5]. In the late nineteenth and early twentieth century, reformers who believed in the rise of scientific medicine and the ideals of the Progressive movement put forward a new fundamental reform. The new mental hygiene approach to treating mental illness again suggested that early treatment of individuals with mental disorders, using new scientific advances in medicine delivered in clinical settings close to academic medical centers, would improve treatment outcomes and prevent chronic disability. Mental hygiene interventions in psychopathic hospitals and clinics would reverse the trends toward evergrowing institutions warehousing individuals with a whole range of mental disorders. The second cycle of reform had about the same unsatisfactory consequences as the first with respect to achieving the goals of preventing chronic mental illness. There was more treatment in outpatient settings as a result of the mental hygiene movement, and new ideas entered treatment

6     H. H. Goldman and J. P. Morrissey

and services through incremental administrative changes, but there was no fundamental reform to be sustained [3–5]. The third cycle was based on the experiences of World War II, in which early treatment and emotional support of combat soldiers and flyers close to the frontlines allowed them to return quickly to their fighting units. On the home front, following a tragic fire at the Cocoanut Grove nightclub in Boston in November of 1942, psychiatrists learned to support first responders and members of the affected community of survivors. They developed theories of community mental health treatment and preventive psychiatry to be practiced in community mental health centers (CMHCs). In addition, during this post-war period, journalists wrote several shocking exposes of widespread neglect of patients in mental hospitals. Together these forces gave rise to a community mental health movement, which was crowned with the passage of Community Mental Health Center Acts in the mid-1960s. For the most part, this fundamental reform, while very successful in expanding treatment opportunities in communities, failed to realize its promises of reducing chronic mental illness, as had been the case with the earlier reform movements [3–5]. In the 1970s an entirely novel cycle of reform was introduced as the initial phase of the community mental health movement became mired in the problems associated with deinstitutionalization, the dramatic reductions of resident populations and beds in state-operated psychiatric hospitals [2, 5]. By the mid-1970s critics questioned the policies and practices of the community mental health reforms. Chronic mental illness emerged as a challenge, as States pursued an aggressive policy of reducing the use of public mental hospitals, discharging patients to the community or to other residential settings, such as nursing homes and board-and-care homes. CMHCs were focusing on a broad set of mental health problems and were not focused primarily on individuals with disabling conditions. And the treatments offered in the centers had neither prevented mental disorders nor rendered them nondisabling [2, 5]. The National Institute of Mental Health (NIMH), which ran the federal CMHC program, responded to the criticism by developing a program of community support services and systems and started a fourth cycle of reform. The community support reform was predicated on a fundamental shift in the delivery of mental health services. It changed the prior emphasis on early treatment to prevent chronicity to an approach to support individuals already disabled by mental disorders. In addition to treatment services, the reform proposed a broad set of social supports and community activities designed to improve the quality of life of individuals who had a chronic

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mental illness. The fourth cycle of reform was a dramatic departure in this regard from the three earlier reform cycles. It fundamentally changed the emphasis of public mental health systems ushering in services such as supported housing and supported employment [2, 5]. Other changes to the community support movement have influenced policy, as well, particularly as a result of the findings of Mental Health: A Report of the Surgeon General [8] and Achieving the Promise [9], the final report of the President’s New Freedom Commission. These two important documents underscored the increasing evidence for improved outcomes for individuals with severe mental disorders and emphasized the opportunity for individual recovery, which meant fuller social participation and greater hope and optimism for improved quality of life. So, too, did the Americans with Disabilities Act [10] and the Olmstead decision of the Supreme Court [11], which created a court requirement for a greater use of community housing settings and more recently for more programs to support employment in competitive jobs for individuals with mental disorders. In the past decade there has been a renewed interest in early intervention, designed to alter the disabling course of mental illness [12–14]. (Policies related to those efforts at early intervention in psychosis are the focus of Chapter 11 in the handbook.) It is too soon to declare whether this initiative in early intervention represents a success of the third cycle of community mental health reform or a new reform cycle entirely. What does seem certain is that the community support system approach fundamentally altered the landscape and priorities of the public mental health system for the past three decades. There was little in the way of changing priorities until the recent rise of interest in early intervention. Individuals with a severe and persistent (i.e., chronic) mental disorder remain the priority population eligible for services in the public mental health system. These individuals typically received disability benefits from either the Veterans Benefits Administration or from Social Security in the form of Social Security Disability Insurance (SSDI) benefits or Supplemental Security Income (SSI) (for those who had not contributed sufficient premiums from employment-related withholding to qualify for SSDI). The disability benefits also conferred eligibility for healthcare benefits, in the Veterans Health Administration or from Medicare (for those on SSDI after a two-year waiting period) or from Medicaid (for those on SSI in most States). The link of disability to health care also shifted the payment sources in the public mental health system from State appropriated grants and contracts to reliance on Medicare and even more or so on Medicaid [13, 15–17]. (This pattern of increasing reliance on mainstream resources is

8     H. H. Goldman and J. P. Morrissey

described in detail in Frank and Glied’s book, Better but not well [18], and it is discussed in several of the next chapters of the handbook.) The Affordable Care Act altered the link between disability status and health insurance, particularly by expanding Medicaid for individuals who are poor, but not necessarily disabled. It also assisted young individuals to obtain private health insurance, which expanded the insurance-based payments for mental health services in the public mental health system. The ACA did not, however, eliminate the need for additional public funds for mental health and social welfare services, because many of the services are not covered by traditional health insurance, and not everyone is insured [16, 17]. There are several forces emerging now that may signal reform cycles for the future [19]. The resurgence of interest in early intervention is one such possible return to the aspirations of early reform cycles. We see a revival of community mental health aspirations for preventing chronic disability with new and more effective interventions [12–14]. Another force is the rise of interest in providing mental health services in general medical settings [19]. We explore those issues later in this chapter.

1.3 Is It Fundamental Reform or a Sequence of Incremental Changes? Do the policy changes reflected in the story of cycles of reform represent fundamental reform or incremental change? The review of cycles of reform suggests that there is a relationship between far-reaching reform movements and small-scale advances. To an extent the incremental steps in policy come when the larger efforts falter or fail to achieve their grandest objectives. For example, hospital services expanded all across the United States in the nineteenth century, even if the promise of the asylum and moral treatment was never fully realized. Outpatient clinics and small psychopathic hospitals offered new hope to patients in academic medical centers at the turn of the twentieth century, even if the mental hygiene movement never prevented mental illness or eliminated disability due to it. And community mental health centers embedded in community support systems function today across the landscape as the core of public mental health services. The fundamental reformers offered a vision of a system of ideal mental health services; incremental changes brought to the mental health system an incomplete, but still meaningful implementation of the blueprint envisioned by the radical reformers. Even when fundamental reforms fall short of their lofty goals, policy makers must address the societal burden associated with the needs of

1  Mental Health Policy: Fundamental Reform or Incremental Change?     9

individuals with severe and persistent mental disorders. Halfway solutions to pressing problems contain the seeds of future incremental improvements.

1.3.1 Sequentialism and the Story of the National Plan for the Chronically Mentally Ill There is an important and instructive relationship between fundamental reform and incremental change. The latter often produces progress even when far-reaching reforms seem to be stalled or to fail. An illustration of this relationship occurred at a transition point between the third and fourth cycles of reform in the early 1980s. A mental health commission convened by President Carter proposed fundamental reforms that were largely undone with the election of President Reagan. Yet a series of progressive mental health policy changes during the Reagan and Bush administrations illustrates the important relationship between fundamental reform and incremental change [2]. These changes in mental health policy during this period suggest that a process we call sequentialism is at work. Sequentialism is the strategic process of selecting a sequence of incremental opportunities for policy change as a pathway to achieve the larger goals of a more fundamental reform. The larger goals are often articulated in reports, white papers and manifestos, sometimes enacted into law, which provide a vision or blueprint for policy change. Often the achievements unfold one step at a time, through the strategic selection of opportunities that emerge on the policy landscape. In 1980 the Congress passed the Mental Health Systems Act, implementing many of the recommendations of the 1978 report of the President’s Commission on Mental Health conducted during the Carter administration [2]. The Commission had called for an expansion of federal mental health services beyond the existing authority of the CMHCs Act. The recommendations of the presidential Commission were addressed in the Mental Health Systems Act, which authorized the expansion of community support services through grants to the States. This legislation marked the evolution of the third cycle of community mental health reform into the fourth cycle of community support [4, 5]. It also established a new approach to federalism by working directly with the States and territories. The Act was authorizing legislation with the expectation that an appropriations law would follow in the new Congress after the elections of 1980. This was fundamental reform [20]. At the same time that the Congress considered new legislation, the Department of Health and Human Services (DHHS) was developing a National Plan for the Chronically Mentally Ill (NPCMI) [21]. The Plan

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was the product of an internal process among various operating divisions of the DHHS, including the Office of the Assistant Secretary of Health, the NIMH within the Alcohol, Drug Abuse and Mental Health Services Administration (ADAMHA), the Social Security Administration and the Health Care Financing Administration, and seasoned with a small number of outside stakeholders. The Plan set forth the key policy issues related to meeting the mental health, general health, and social welfare needs of individuals with a chronic and disabling mental illness. The Plan then proposed a series of changes in statutes and regulations in the mainstream health and human services programs overseen by the DHHS, namely Medicare, Medicaid, and the disability programs of the Social Security Administration. While the Mental Health Systems Act authorized a sweeping mechanism to reshape community support systems through new and expected increases in categorical federal mental health subsidies to the States, the National Plan recommended a series of incremental adjustments to mainstream health and human services programs—insurance and income support programs, which were to become central to the funding of community mental health services in the years to come [2, 21]. The Mental Health Systems Act was signed into law with enthusiasm in October 1980, before the presidential election. The National Plan was released with hesitation in December of 1980 after the election of Reagan to replace Carter. The title of the Plan was changed at the last minute. It was labeled “Toward a National Plan.” At the time of the Reagan inauguration, the Systems Act stood but with authorizing language only and no appropriation. The fundamental reform plan lacked a stream of funding [20]. The National Plan was more of a hope of incremental opportunities, a blueprint without any serious expectation that it would yield fundamental change. The fears of the Carter faithful were realized with the inauguration of President Reagan and the passage of the Omnibus Budget Reconciliation of 1981, which repealed all but a minor provision of the Mental Health Systems Act and replaced it with a block grant to the States. The block grant was funded at a level of appropriation considerably lower than the prior year’s CMHCs Program budget. The budget reconciliations, which required only simple majorities in the Senate and could not be filibustered, became a tool of the “Reagan revolution” with immediately negative results for fundamental mental health policy reform. But as the aphorism goes, “those who live by the sword die by the sword.” The budget reconciliations were to become the vehicles for incremental progress in mental health policy in the hands of the Democratic majority in the Congress. The series of Omnibus

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Budgets of the mid-1980s provided a sequence of incremental mental health policy successes, particularly in the mainstream programs of the DHHS. The changes were small and escaped opposition in omnibus budget bills crowded with many detailed proposals and policy changes [2]. In their report, Inching Forward, and their paper, The Quiet Success of the National Plan for Chronic Patients, Chris Koyanagi and Howard Goldman [22, 23] documented how a sequence of provisions of the Omnibus Budgets in the Reagan and Bush years implemented most of the recommendations of the National Plan. Sequentialism prevailed, one step at a time. Although the legislation promoting fundamental reform had failed, it has provided the blueprint and vision for a sequence of incremental changes.

1.3.2 Behavioral Health Insurance Parity: Sequentialism Exemplified, Again Almost from the beginning of health insurance in the 1930s and 1940s, coverage of behavioral health conditions was limited in one way or another. Often no coverage was provided at all. When provided, annual and lifetime limits were imposed separately on behavioral health conditions and services—and at much lower levels than for all other health conditions [18]. For example, a policy that covered general medical and surgical care up to one million dollars in a lifetime might have a limit of ten thousand dollars for behavioral health care. The number of hospital days in a year or a lifetime often was limited, and the number of outpatient visits was often restricted or not covered at all. Deductibles were separate and higher for behavioral health conditions, as were cost-sharing provisions in terms of co-payments and coinsurance rates [18, cf. pp. 56–58]. When managed care techniques were introduced to control utilization, behavioral health care often was managed differently and more stringently [18, cf. pp. 67–68]. Advocates of better health insurance coverage argued for parity, that is, coverage of behavioral health conditions using the same policy rules as for all other health conditions. They sought coverage that was non-discriminatory and that would protect individuals from catastrophic financial losses due to lack of insurance or underinsurance. They wanted coverage that would limit out-of-pocket costs to provide financial protection for individuals who used behavioral health services in the same way health insurance protected individuals who used other health services [2]. The process of accomplishing this fundamental reform of health insurance policy occurred very slowly in a series of steps reaching as far back as the

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Kennedy Administration. The story of parity illustrates the power of sequentialism and the persistence that may be required to achieve its progressive policy objectives. In 1963 President Kennedy directed the Civil Service Commission (now called the Office of Personnel Management) to provide full parity in coverage of mental illness in federal employees’ health insurance [24]. This began the process of improving health insurance coverage for individuals seeking treatment and services for a mental disorder. It has been a five-decade story of ups and downs, ending in passage of a federal parity law in 2008 (Mental Health Parity and Addictions Equity Act) and a mandate for coverage of behavioral health conditions with full parity in the ACA in 2010. Along the way, there has been a sequence of small steps—most forward, but some in retreat, toward the goal of nondiscriminatory coverage [2, 18, 25, 26]. Many policy actors have been involved in the movement toward parity, including States, the federal government, and private sector health insurance. After President Kennedy started the effort with mental health parity in health insurance for federal employees in the early 1960s, the activity then shifted to the States. In 1971, Connecticut passed a mandate for some level of mental health coverage in insurance policies written within the State. This was followed over the next 35 years or so by 34 States requiring some form of mental health insurance coverage of mental disorders [2, 25]. For more than a decade after the initial parity policy directive under President Kennedy, federal employees had generous coverage for mental disorder treatment. Coverage declined somewhat in the mid-1970s, in the face of increases in expenditures for treating mental illness in the program, and finally by 1981 all of the federal plans had limitations similar to the limits seen in typical health insurance plans [27]. And while this drop in coverage was a dramatic setback at the time, the federal employees program was to register a key parity success at the turn of the century, as we shall describe later. Each of the main federal health insurance programs, Medicare and Medicaid, has its own tale of limitations and benefit expansions for treatment and services for individuals with a mental disorder. The limits were imposed by these programs to control costs, with some restrictions similar to private insurance and others designed to avoid paying for mental health services that had been funded by the States as a historic responsibility. For example, Medicare Part A would not pay for more than 190 hospital days in a lifetime in a free-standing psychiatric hospital. Initially Medicare Part B would only cover $500 of outpatient mental health services with a co-insurance rate of 50%—in contrast to its usual cost-sharing level, set at 80%. Medicaid would not cover any care in an “institution for mental disease (IMD),” such as a

1  Mental Health Policy: Fundamental Reform or Incremental Change?     13

psychiatric hospital or specialized psychiatric nursing home, for beneficiaries between the ages of 22 and 64 years. As we discussed above, these programs experienced steady improvements in coverage during the 1980s in sequential fashion, following the blueprint of the NPCMI [2, 21–23]. With the major exception of the IMD rule, Medicaid came quite close to parity coverage, although fees were quite low and some managed care arrangements were disadvantageous. Medicare benefits for “nervous and mental disease” grew more slowly during the 1980s. Through a succession of small changes in Part B embedded in several Omnibus Budget Reconciliations, the $500 limit was increased and then dropped entirely on outpatient mental health treatment. “Medication management,” which had been covered at parity, at first only for visits for individuals with dementia, eventually was covered in full for all mental disorders [2, 23]. But then the sequence of incremental Medicare improvements halted. For more than two decades there were few if any changes in Medicare Part B, which continued to have 50% cost sharing for all outpatient services except for medication management. Then, finally in 2008, Medicare was granted parity in behavioral health coverage. It was to be phased in slowly over a several year period [28]. The history of achieving federal parity for private insurance reflects a similar process of incremental improvements over the period from the early 1990s to the passage and implementation of the ACA. This sequence begins with the Clinton healthcare reforms of 1992 and 1993, starting with the Clinton-Gore transition team right through to the failure of the Health Security Act [2]. From the beginning of the Clinton healthcare reform effort, mental health services were part of the policy discussion. During the transition process, there were a few conversations about including mental health in the reform task force, but the main focus was on general health policy issues. When the reform process began, there was a working group on behavioral health services, co-chaired by Tipper Gore, the wife of the Vice President, and Bernard Arons, M.D., a psychiatrist at the NIMH with financing expertise. The workgroup recommended parity coverage for behavioral health conditions on the basis that behavioral health conditions posed a significant public health burden and that treatments were effective. Furthermore, the experience with State parity had not demonstrated significant cost increases; and managed care was emerging as a potential, but as yet not fully demonstrated, brake on expenditures. The overall health reform group accepted the idea that behavioral health services should be part of a benefit package. The Health Security Act also accepted the principle of parity, but pushed it off to the future, when there

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would be more data on potential cost impacts. There were still concerns about whether mental disorders were “real” and treatable, as well as concerns about the cost of care. Concerns lingered about behavioral health care, but the Health Security Act faced bigger challenges, and there was never a vote on it [2]. Mental health advocates were chastened by some of the resistance and were challenged to move ahead with legislation focused on mental health parity. In addition to Tipper Gore, two significant champions emerged in the Senate, Paul Wellstone (D—Minnesota) and Pete Domenici (R—New Mexico). Each of these two members of Congress had family members affected by severe mental illness; each was a believer in the need for a federal parity law. Together they built support for legislation in both houses of Congress. By 1996 they succeeded in passing the first federal parity law. The Federal Mental Health Parity Act (PL 104–204) stipulated that any private health insurance plan under federal jurisdiction, particularly plans of selfinsured companies governed by the ERISA law, must not have separate annual and lifetime limits for treatment of mental disorders [2]. This meant that plans could not limit coverage, for example, to ten thousand dollars in a year for treatment of mental illness, when the plan provided coverage of one million dollars for all other conditions. The Mental Health Parity Law did not cover substance-related disorders, however, and it did not mandate mental health coverage in ­insurance plans. The law applied only to plans that covered mental disorders. And it did not address differential limits on services or differential costsharing arrangements. The Mental Health Parity Law was considered an incremental, rhetorical victory rather than a fundamental reform, but it was an important first step toward federal parity. It added considerable financial protection against being bankrupted by an episode of treatment for mental illness that would be covered by the annual limits governing any other health condition [29]. Because the law was only a partial success and advocacy for parity continued to encounter opposition, Tipper Gore had the idea that a report on mental health from the Surgeon General might dispel some of the lingering concerns about the scientific foundation of mental health. She hoped that a review of the science of mental health and mental illness would reinforce the evidentiary support of policies designed to improve access to quality services and would improve financing, particularly health insurance parity [2]. Mental Health: A Report of the Surgeon General was released in December 1999 by then Surgeon General, Dr. David Satcher [8]. The report concluded that “Equality between mental health coverage and other health coverage – a

1  Mental Health Policy: Fundamental Reform or Incremental Change?     15

concept known as parity - is an affordable and effective objective” [8, p. 23]. One of its suggested “courses of action” called on the policy makers to “Reduce Financial Barriers to Treatment” [8, p. 23]. Prior to the release of the Surgeon General’s report, at a White House Conference on Mental Health in June of 1999, President Clinton also endorsed parity. He directed the Office of Personnel Management to implement full parity for all behavioral health services, including substance abuse treatments. Parity applied to in-network services only in all of the plans in the Federal Employees Health Benefits (FEHB) program, beginning in 2001. The President suggested that this policy directive would create a natural experiment in policy implementation. In fact, the federal government issued a call for proposals to evaluate the implementation and impact of the FEHB parity policy [25]. The results were published in 2006, and they were to have influence as the debate on full parity continued to unfold [30, 31]. Many mental health advocates were eager to see Al Gore prevail in his bid for the presidency in 2000, because they felt confident that a Gore Administration would fight hard to fulfill the goal of full parity for behavioral health conditions and services in health insurance. The contested election, resulting in the inauguration of George W. Bush in 2001, would prove to hold more promise for parity than mental health advocates imagined. President Bush fulfilled a campaign promise to convene a presidential commission on mental health, which assembled in 2003 and issued a report in 2004 entitled, Achieving the Promise [9]. The report of the President’s New Freedom Commission specifically and emphatically called for full parity for behavioral health conditions and services in health insurance plans [9]. This strong policy support from a commission convened by a Republican president was consequential, particularly before the results of the FEHB natural experiment in full parity were released in 2006 [30, 31]. Those results concluded that parity could be implemented successfully in a large program of diverse insurance plans in markets all across the country without an increase in total expenditures attributable to parity. The findings indicated that full parity did not increase total expenditures more than the increases observed in a set of comparison plans. Further, parity resulted in reductions in out-of-pocket expenditures. Together, these findings indicated that the parity policy achieved its main objective in terms of improving financial protection for all beneficiaries [30]. Over the next two years, through a complex set of negotiations and deliberations, advocates and lawmakers, led by Representatives Patrick Kennedy (D—Rhode Island) and Jim Ramsted (R—Minnesota) in the House and

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Ted Kennedy (D—Massachusetts) and Pete Domenici (R—New Mexico) in the Senate, crafted and passed the Mental Health Parity and Addiction Equity Act of 2008 [31, 32]. The law provided for full parity for all behavioral health conditions, including substance-related disorders. The law covered all health insurance provisions, such as deductibles, service limits and cost-sharing; and it called for parity in the techniques of management employed by health plans to control expenditures. It did not, however, apply to small employer plans (of fewer than fifty employees), and it did not mandate behavioral health coverage. So, it only applied to plans that offered behavioral health coverage, which was the vast majority of health insurance plans [31, 32]. The MHPAEA was an enormous step forward, but it did not quite reach the goal line. While the law was being implemented, Barack Obama was elected President and health reform began in full swing. When the Patient Protection and Affordable Care Act (PPACA or ACA) was passed in 2010 [33], the sequence of incremental steps for behavioral health care was finally completed—at least in terms of legislative policy. The ACA mandated behavioral health care as an essential benefit—at parity. And while problems remained in terms of full implementation of the intent of the MHPAEA and ACA legislation, the legislative sequence achieved its promise. And yet, as we write these sentences, the ACA and its behavioral health provisions could be reversed. What sequentialism achieves, sequentialism can take away.

1.3.3 What Is on the Policy Horizon in Terms of Fundamental Reform and Incremental Change? We are often asked about future cycles of reform and how they might achieve fundamental reform or succeed in making incremental progress. Parity suggests that behavioral health care might be moving closer to the mainstream of healthcare delivery as the distinctions in coverage policy diminish between specialty behavioral health care and general medical care. The ultimate manifestation of a policy of parity would be reflected in the end to separate behavioral health benefits in a health insurance policy. There are rarely specialized benefits for conditions affecting other body systems or categories of impairment. We do not speak of cardiac benefits or dermatological benefits in health insurance. Full parity might be signified by the end of separate behavioral health benefits.

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In a speculative paper on the fifth cycle of reform, Goldman suggested that not only might parity mean the end of specialized mental health ben­ efits in insurance, but it might also signal the end to specialty mental health services altogether [19]. If parity signifies that mental disorders are not so different from other health conditions, perhaps eventually the treatment technology will become generalized enough that general medical doctors will become adept at using these mainstream treatments. The ease of use of the selective serotonin uptake inhibitors (SSRIs, such as fluoxetine [Prozac]) led to the explosion in their use by general medical doctors. As treatments for syphilis, tuberculosis, and leprosy became simpler and more effective, specialties focused on those conditions mostly became absorbed into general medical practice—or at least general infectious disease practice. In the same way, mental health care may become the main province of general medical care as treatments are simplified. Collaborative care [34] is one very effective model of organizing and delivering behavioral health services in primary care settings. It does not end, however, the need for specialty services, as the model depends on consultation from a psychiatrist. One of its leading proponents, Jurgen Unutzer has pointed out in a personal communication, “Some psychiatrists fear that collaborative care means that primary care will ‘eat our lunch,’ failing to see that the approach actually means ‘more lunch.’” The demand for psychiatric consultation could be very great in a world dominated by collaborative care, given the prevalence of mental disorders presenting in general medical settings. More fundamental changes in the treatment technologies for behavioral health conditions, however, might truly end the specialized practice of psychiatry and the other mental health disciplines. Yet, the end to talk therapies and other specialized treatments is not on the immediate horizon. There are other developments emerging. On the rise, once again, is an interest and focus on early intervention in mental disorders, particularly psychotic disorders [12]. Even though these services are effective in the shortterm, it is not clear yet, if they will actually prevent long-term disablement. There is merit in improving any outcomes for individuals who experience a psychosis, but we do not know if these improvements will herald a new reform cycle in mental health services—or just represent an improvement in the community support approach of the fourth cycle of reform. We do not know if they might introduce a fifth cycle of reform—or if they represent the actualization of the optimistic hopes that kindled the community mental health reform.

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1.4 Conclusion What this introduction to the Handbook of American Mental Health Policy is intended to make clear is that the history of policy in this sphere has been characterized by a series of cycles of fundamental reform, followed by a period of incremental gains. What might look like retrenchment to the fundamental reformers can look like slow progress to those on the ground. A sequence of incremental changes can bring progress, even in conservative times [26]. At this point in time, as we find ourselves immersed in the uncertainty about the future of health reform and the place of behavioral health within it, there are many challenges for mental health policy. The chapters that follow in the handbook address many of the interesting and challenging questions and issues that remain to be addressed.

References 1. Gil, D. (1973). Unraveling social policy. Cambridge, MA: Schenkman. 2. Grob, G. N., & Goldman, H. H. (2006). The dilemma of federal mental health policy: Radical reform or incremental change? New Brunswick: Rutgers University Press. 3. Morrissey, J. P., Goldman, H. H., & Klerman, L. V. (1980). The enduring asylum: Cycles of social reform at the Worcester State Hospital. New York: New York Grune and Stratton. 4. Morrissey, J. P., & Goldman, H. H. (1984). Cycles of reform in the care of the chronically mentally ill. Hospital & Community Psychiatry, 35(8), 785–793. 5. Goldman, H. H., & Morrissey, J. P. (1985). The alchemy of mental health policy: Homelessness and the fourth cycle of reform. American Journal of Public Health, 75(7), 727–731. 6. Grob, G. N. (1966). The state and the mentally ill. Chapel Hill: University of North Carolina Press. 7. Grob, G. N. (1973). Mental institutions in America: Social policy to 1875. New York: Free Press. 8. U.S. Department of Health and Human Services. Office of the Surgeon General. (1999). Mental health: A report of the surgeon general. Rockville, MD. 9. U.S. Department of Health and Human Services. (2004). The promise. Rockville, MD: President’s New Freedom Commission on Mental Health. 10. Americans with Disabilities Act of 1990. Public Law 101–336. (1990). 108th Congress, 2nd session (July 26). 11. Olmstead v. L.C. (1999). 527 U.S. 581.

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12. Lieberman, J. A., Dixon, L. B., & Goldman, H. H. (2013). Early detection and intervention in first-episode schizophrenia: A new therapeutic model. Journal of the American Medical Association, 310(7), 689–690. 13. Goldman, H. H., Karakus, M., Frey, W., & Beronio, K. (2013). Financing first episode psychosis services in the United States. Psychiatric Services, 64(6), 506–508. 14. Dixon, L. B., Goldman, H. H., Bennett, M., Wang, Y., McNamara, K. A., Mendon, S. J., … Essock, S. M. (2015). Implementing coordinated specialty care for early psychosis. Psychiatric Services, 66(7), 691–698. 15. Frank, R. G., Goldman, H. H., & Hogan, M. (2003). Medicaid and mental health: Be careful what you ask for. Health Affairs, 22(1), 101–113. 16. Goldman, H. H. (2010). Will health insurance reform in the United States help people with schizophrenia? Schizophrenia Bulletin, 36(5), 893–894. 17. Goldman, H. H., & Karakus, M. C. (2014). Do not turn out the lights on the public mental health system when the ACA is fully implemented. Journal of Behavioral Health Services Research, 41(4), 429–433. 18. Frank, R. G., & Glied, S. A. (2006). Better but not well. Baltimore, MD: Johns Hopkins University Press. 19. Goldman, H. H. (2002). Parity—Prelude to a fifth cycle of reform. Journal of Mental Health Policy and Economics, 5(3), 109–113. 20. Foley, H. A., & Sharfstein, S. S. (1983). Madness and government: Who cares for the mentally ill? Washington, DC: American Psychiatric Association. 21. Department of Health and Human Services Steering Committee on the Chronically Mentally Ill. (1980). Toward a national plan on the chronically mentally ill. Washington, DC: U.S. Public Health Service. 22. Koyanagi, C., & Goldman, H. (1991). Quiet success of the national plan for chronic patients. Hospital & Community Psychiatry, 42(9), 899–905. 23. Koyanagi, C., & Goldman, H. H. (1992). Inching forward. Alexandria, VA: National Mental Health Association. 24. Kennedy, J. F. (1963). Message from the president of the United States relative to mental illness and mental retardation. Washington, DC: U.S. Government Printing Office. 25. Hennessy, K. D., & Goldman, H. H. (2001). Full parity: Steps toward treatment equity for mental and addictive disorders. Health Affairs, 20(4), 58–67. 26. Goldman, H. H. (2006). Progress in mental health policy in conservative times: One step at a time. Schizophrenia Bulletin, 32, 424–427. 27. Hustead, E., Sharfstein, S., Muszynski, S., Brady, J., & Cahill, J. (1985). Reductions in coverage for mental and nervous illness in the federal employees health benefits program: 1980–1984. American Journal of Psychiatry, 142(2), 81–186. 28. Medicare Improvements for Patients and Providers Act of 2008 (MIPPA). (2008). Public Law 110–175, July 15, 2008.

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2 9. Goldman, H. H. (1997). Parity redux. Harvard Review of Psychiatry, 5, 91–93. 30. Goldman, H. H., Frank, R. G., Burnam, M. A., Huskamp, H., Ridgely, M. S., Normand, S. T., … Blasinsky, M. (2006). Behavioral health insurance parity for federal employees. New England Journal of Medicine, 354(13), 1378–1386. 31. Barry, C., Huskamp, H., & Goldman, H. H. (2010). A political history of federal mental health and addiction insurance parity. Milbank Quarterly, 88(3), 404–433. 32. The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA). (2008). Sections 511 and 512 of Division C of Public Law 104–343, October 3, 2008. U.S. Congress: House of Representatives. 33. Patient Protection and Affordable Care Act (PPACA). (2010). 42 U.S. Congress: 18001. 34. Gilbody, S., Bower, P., Fletcher, J., Richards, D., & Sutton, A. J. (2006). Collaborative care for depression: A cumulative meta-analysis and review of longer-term outcomes. Archives of Internal Medicine, 166, 2314–2321.

2 Division of Labor: Function Shifts and Realigned Responsibilities in the Evolving Mental Health Services System Joseph P. Morrissey and Howard H. Goldman

2.1 Introduction Over the past several decades there has been a profound shift in where people with severe mental illness (SMI) live and where mental health services are provided to them [1]. Deinstitutionalization of state mental hospitals [2–4] led to a scattering of patients with SMI to shelters and the streets, board and care homes, nursing homes, family residences, jails and prisons, and a variety of other accommodations. State mental hospitals, once the primary locus of their care and treatment, were largely supplanted by a diverse array of for-profit and not-for-profit treatment providers in the health, social welfare, and correctional sectors. These changes were due primarily to policy developments in the broader health, disability, and social welfare fields rather than to efforts within the mental health system itself [5]. The result, in many respects, was a shrinkage of the traditional mental health system but an enormous expansion of the entities and settings that now exercise custody, control, and influence over the day-to-day well-being and welfare of people with SMI. J. P. Morrissey (*)  Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA H. H. Goldman  University of Maryland School of Medicine, Baltimore, MD, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


22     J. P. Morrissey and H. H. Goldman

As the service system expanded and diversified, state mental health authorities lost their dominance. In the 1970s and 1980s, federal health and disability insurance programs began to shape what mental health services were available in the community and how they would be paid for [6, 7]. The fragmentation of services that emerged with deinstitutionalization was matched by growing fragmentation at the management and funding levels as well. Absent in the evolving mental health system was a central point of planning and accountability to exercise the type of stewardship once performed by state mental health authorities. To understand these shifts and realignments, this chapter considers the division of labor among mental health providers and service sectors, how responsibilities have evolved over the past several decades, and the shape they may take in the future. We start with the multiple functions served by state mental hospitals in the 1950s and 1960s. The public mental health system at that time was largely coterminous with these hospitals. Within a generation, however, a newer division of labor emerged in response to forces from inside and outside of the public mental health arena that transformed the delivery, management, and funding of mental health services [8]. These changes diverted much of the responsibility for patients with SMI away from state mental health authorities to a diverse array of for-profit and notfor-profit providers in the health, social welfare, and correctional sectors. We also consider efforts at both the structural/governance level and the clinical services level to overcome fragmentation of care and treatment for persons with SMI including current efforts to develop primary care medical homes and specialty health homes. Some observers believe that these efforts will ultimately lead to a unitary healthcare system in the United States for both medical and psychiatric care [9]. Others maintain that specialty mental health services will still be required for the foreseeable future to meet the distinctive needs of people with SMI. Whatever the future direction of the treatment system, the reality is that people with SMI will continue to rely upon the social welfare system for the resources needed to live in the community. Efforts to integrate and manage healthcare and social welfare policies will continue to shape the evolving division of labor for people with SMI in the decades ahead.

2.2 Multiple Functions of State Mental Hospitals State mental hospitals of the 1950s and 1960s were complex institutions. They served multiple functions acquired as much by default as design during the late nineteenth and early twentieth centuries as American society

2  Division of Labor: Function Shifts and Realigned …     23

was undergoing rapid industrialization, urbanization, and immigration [1]. Goldman and colleagues [10] identify several of the manifest and latent functions served by these institutions. Manifest functions are those that are intended and readily visible to most observers whereas latent functions are less obvious, often unintended, and unspoken [11]. The manifest functions of state hospitals were to provide short- and intermediate-term inpatient and sometimes outpatient psychiatric treatment as well as long-term custody for both voluntary and involuntary (civil and criminal) patients. Among their latent functions were public safety and social control of violent and difficult patients unwanted or unmanageable in other settings, a poorhouse for those unable to earn a living in the community, an escape and asylum of last resort for those suffering from psychosis or other disabling mental illnesses, a safety net that allowed immigrant and working-class families opportunities for upward social mobility without the burden of caring for disabled elders, a public jobs program for elected officials and local communities, a research and training site for academics, and an in-house cottage industry for meeting the daily sustenance needs of patients and staff. The circumstances in the late nineteenth and early twentieth centuries that led state hospitals to acquire and perform this wide array of functions have been well documented by a generation of social historians [12–14]. The resident patient population of these hospitals (Fig. 2.1) peaked in 1955 at about 559,000 [15]. Hidden in these aggregate numbers was an underlying reality that most state mental hospitals operated two distinct but functionally related parts: a large, minimally staffed, custodial institution for long-stay patients housed on back wards and a smaller, better staffed, acute care hospital for short-stay and intermediate-stay patients located on frontwards [16]. Front wards focused on new arrivals, mostly younger and acutely disturbed patients, who received more active treatment whereas back wards housed elderly and long-stay patients who received basic custodial care. To accommodate the continual flow of new admissions, patients were moved front to back as their conditions deteriorated or failed to respond to available treatments. By the mid-1950s, newer psychoactive drugs were coming into widespread use for recently admitted patients leading to better symptom control, staff optimism, and early discharge [1]. Medical staff with WWII military experience returning soldiers quickly to their units following combat traumas also pushed for early release of patients back to families and communities [17]. For the first time, the steady upward increase in the resident patient census that started in the late nineteenth century showed signs of reversal and gradual decline.

24     J. P. Morrissey and H. H. Goldman

Fig. 2.1  Resident patientsa in state and county psychiatric hospitalsb: 1950–2014 (Source Data for 1950–1970 are from Goldman and colleagues [5] and for 1975–2014 from Lutterman and colleagues [29]. aResident patient census counts are based upon end-of-year reports of the cumulative number of patients in residence at each hospital. bMost states directly operated psychiatric hospitals but in several, including Wisconsin and New Jersey, counties maintained equivalent hospitals. The National Mental Health Statistics Reporting Program managed initially by the National Institute of Mental Health and currently by the Center for Mental Health Services at the SAMHSA has combined utilization data for both types of hospitals in their annual reports. Throughout this chapter, the terms state mental hospital or state psychiatric hospital are used with reference to both types of institutions)

2.3 Community Mental Health and Deinstitutionalization The federal government became active in mental health reform for the first time following WWII [1]. This was stimulated in part by the high rates of rejection from military service in WWII for psychiatric reasons, underscoring the extent of untreated mental illness in the general population of the United States. Two pathbreaking legislative authorizations ushered in the new federal role: the National Mental Health Act (1946) and the Mental Health Study Act (1955). The former established the National Institute of Mental Health with the mandate to stimulate research and clinical training efforts while the latter established the Joint Commission on Mental Health to assess the needs and resources of persons with mental illness and to make recommendations for a national mental health program. In 1961, the Commission issued its final report, Action for Mental Health, which promoted the idea of community mental health rather than state hospital care [18].

2  Division of Labor: Function Shifts and Realigned …     25

President Kennedy endorsed the community concept which became the “bold new approach” in the Community Mental Health Centers Act (1963), legislation that authorized federal funding for the construction and staffing of small community-based mental health treatment centers throughout the United States. By 1980, more than 750 Community Mental Health Centers (CMHCs) were developed under this legislation, serving catchment areas representing over 50% of the US population [19]. From their inception, CMHCs focused their efforts on new populations of previously untreated individuals, for the most part ignoring patients with SMI traditionally served by state mental hospitals. Yet, the rhetoric surrounding CMHCs promoted their potential for replacing state institutions and saving resources that could be better spent in the community. This advocacy energized efforts during the 1970s to accelerate state hospital census reductions, a policy that became known as “deinstitutionalization” [4, 11, 20]. Although the onset and pace of deinstitutionalization varied in different states, nationally, it proceeded through two distinct phases [2]. The first phase, roughly from 1955 through the mid-1960s (Fig. 2.1), was marked by gradual census reductions, increased rates of admissions and readmissions, and a declining length of stay. By 1960, the annual census was down 4% to 535,540; by 1965, it was down 15% to 475,202 (Fig. 2.1). State hospitals functioned as backup for the fledgling community programs which were able, in turn, to concentrate on the development of services for less disabled patients residing in the community. As long as there was a revolving door at these hospitals so that released patients could be easily returned to state hospitals—by families, community clinics, or police authorities—deinstitutionalization was not a major political issue. The second phase started in the late 1960s when the pace of deinstitutionalization rapidly accelerated from a benign practice to wholesale emptying of state mental hospitals. The census decline was 11% between 1960 and 1965, it jumped up to 29% between 1965 and 1970, to 43% between 1970 and 1975, dipping to 32% between 1975 and 1980 (Fig. 2.1). Cumulatively, the years between 1965 and 1980 witnessed the largest state hospital census reductions as the resident population fell by 343,038 patients, equivalent to a 61% drop from its peak in 1955. This shift from benign to radical deinstitutionalization was precipitated by changes in federal health and social welfare insurance benefits (see below) as well as civil libertarian litigation over the state mental hospital commitment process and intensive lobbying by community mental health advocates to shift resources from state mental hospital budgets to community care.

26     J. P. Morrissey and H. H. Goldman

CMHCs were totally unprepared and unwilling to deal with the release of these successive waves of patients many of whom had severe and long-term mental illness. CMHC leaders saw their mission as preventing chronicity, not dealing with the failures of previous approaches to mental health care [21]. Developments in medicine also played a role in changing the numbers and diagnostic composition of patients served by state mental hospitals [22]. Following the introduction and widespread use of antibiotic treatments for syphilis, paralytic dementia almost disappeared from the wards of these hospitals. Mental retardation also gradually became the domain of a special developmental disabilities care system. Other advances in medical technology helped reshape the practice of psychiatry, deflect state mental hospital admissions, and shift care responsibilities to other medical specialties: brain tumors and hemorrhages to neurosurgeons; central nervous system diseases and epilepsy to neurologists; and life-threatening conditions like febrile catatonia to general internists. The result was that psychiatric practice and state mental hospital care were stripped of almost all responsibility for treatable physical illnesses and many brain dysfunctions [22]. The brunt of state hospital downsizing was felt in local communities that were unprepared for the influx of thousands of former state hospital patients. These patients often encountered the hostility and rejection of the general public and the reluctance of health and welfare agencies to assume responsibility for their care. Tens of thousands ended up in rooming houses, foster homes, nursing homes, rundown hotels, and on the streets where homelessness was a growing concern in urban America. The transfer of patients from the “backwards to the back alleys” [23] led to widespread concern that deinstitutionalization was a disaster and that states had abdicated their responsibilities for persons with SMI [4].

2.4 Mainstream Health and Social Disability Insurance Programs Despite new initiatives and controversies that were swirling in the community mental health arena throughout the 1980s, the developments that were to have the greatest impact on the lives of people with SMI arose from outside rather than inside the public mental health system [4]. Two competing visions had stoked policy debates concerning the direction and future of mental health services for people with SMI [6]. Advocates of exceptionalism stressed the uniqueness of mental illness and its associated social disabilities, insisting that a service system separate from general health care and

2  Division of Labor: Function Shifts and Realigned …     27

social services was necessary to meet the special needs of persons with SMI. Advocates of mainstreaming, in contrast, wanted to overcome the segregation of persons with SMI and called for a service system that was fully integrated not only with medical care but with housing, income maintenance, and the other social welfare benefits available to individuals regardless of their mental health status. The mainstreaming agenda received a big boost from enactment of the Medicaid and Medicare amendments to the Social Security Act of 1965 provided publicly financed health insurance benefits to the elderly (Medicare) and to medically indigent persons (Medicaid) [6]. The 1972 amendments to the Social Security Act authorized Supplemental Security Income (SSI), a means-tested program for disabled individuals without sufficient work experience to have made payroll contributions to the older program for disabled workers, Social Security Disability Insurance (SSDI). Both programs provided monthly income benefits to disabled individuals including those with a SMI. Soon, state hospital authorities recognized that these provisions allowed for a huge shift of costs from state to federal budgets. According to federal regulations, patients between the ages of 22 and 64 years (the majority of patients in most state hospitals) were ineligible for Medicaid while residing in state mental institutions; once discharged to the community, however, these patients were eligible for Medicaid benefits. Within a short period of time, these fiscal and legal incentives led to the exodus of hundreds of thousands of patients from state mental hospitals. Supported largely by federal Medicaid, SSI, and SSDI payments, thousands of former patients lived in nursing homes, board and care homes, adult homes, and other institutional settings in the community. These mostly private, profit-making facilities serve the custodial and asylum functions that were once performed almost exclusively by state mental hospitals. The growth of what has been characterized as “social control entrepreneurialism” [24] perpetuated the segregation of the chronically mentally ill population in a new ecological arrangement in the community. Some observers felt that the conditions in local communities were as bad as those in the institutions that proponents of deinstitutionalization were trying to replace. National data reported by Goldman and colleagues [5] illustrate these trends. In 1974 approximately 85,000 nursing home residents had been transferred directly from state mental hospitals. Further, approximately half of the 1.3 million nursing home residents in 1977 had a psychiatric diagnosis, mostly organic mental disorders including senility without psychosis. Thus, many nursing home residents in the early 1970s had conditions

28     J. P. Morrissey and H. H. Goldman

that would have led to state hospital admissions in prior decades. Moreover, between 800,000 and 1.5 million severe and persistent mentally ill patients supported by SSI and SSDI payments were living in private homes or a variety of community residences. These data clearly indicate that rather than deinstitutionalization, a process of transinstitutionalization or lateral transfer from one institutional setting to another in the community had occurred. In the process, the custodial care function of the state hospitals for the elderly and long-stay patients was largely transferred from state mental hospitals to nursing homes and to residential facilities supported by the social welfare system [25–28]. These transfers enabled state mental health authorities to shift their expenditures [29] away from exclusive support of inpatient care in state mental hospitals to a growing array of community-based services serving released patients (Fig. 2.2). Medicare and Medicaid funding as well as the rapid expansion of thirdparty reimbursement and managed care plans in the 1980s stimulated the use of inpatient psychiatric services in general hospitals rather than state mental hospitals [30]. Between 1988 and 1994, general hospitals experienced a 35% increase in discharges with a primary psychiatric diagnosis [31]. Patients who would have been clients of state mental hospitals in prior

Fig. 2.2  State Mental Health Authority (SMHA) controlled expenditures for state psychiatric hospital inpatient and community-based services as a percent of SMHA Expenditures (Source Data are from Lutterman and colleagues [29])

2  Division of Labor: Function Shifts and Realigned …     29

years replaced privately insured patients who, under managed care, were largely treated in community settings. Increasingly, nonprofit general hospitals were treating publicly financed patients with more severe illnesses. By the mid-1990s, nonfederal general hospitals became the dominant provider of inpatient psychiatric services followed by private psychiatric and VA hospitals, together accounting for 75% of total inpatient episodes (Table 2.1). State hospitals had shrunk to about 13% of total inpatient episodes. However, the shift to a predominantly outpatient services system was even more dramatic [5]. While inpatient episodes grew twofold from 1.3 to 2.5 million, outpatient episodes grew over 18-fold from about 379 thousand in 1955 to over 7 million in 1994, with state hospitals accounting for only about 1% of the episodes in that year. The 1980s also saw a shift in the social control functions of state mental hospitals to the criminal justice system [32]. For much of the prior century, state mental hospitals had served as the repository of individuals who community agencies and police authorities found difficult to manage. With the advent of the dangerousness standard and more restrictive commitment criteria for involuntary state hospitalization, this social control function was gradually transferred to jails and eventually to prisons as well. Jails offered the only secure 24-hour detention place in most communities and, when confronted with individuals displaying bizarre behavior or who were disrupting public safety, police officers readily turned to arrest and jail booking. In the following decades, the numbers of persons with mental illness in the criminal justice system steadily increased [33]. By the late 1980s, then, the division of labor for the care and treatment of persons with SMI in the United States had been dramatically altered largely by developments in mainstream health care and social disability insurance programs. Much of the responsibility for custodial care had been transferred to private sector nursing homes and board and care homes. Psychiatric treatment was available to new populations on a much wider scale in public and private CMHCs, outpatient clinics, and general hospitals (Table 2.1). By the mid-1990s, with the expanding array of community-based mental health services, total patient care episodes had increased nearly sixfold over 1955 [29]. Jails and prisons also had begun to be much more involved in social control of mentally ill individuals who were unable to meet involuntary commitment criteria. State mental hospitals had largely surrendered their treatment responsibilities for civil commitments. Their residual functions focused primarily on forensic admissions for competency restorations, sexual offenders, and insanity acquitees [34].

30     J. P. Morrissey and H. H. Goldman Table 2.1  Percent distribution of US inpatient and outpatient episodes of care by type of mental health services organization: 1955 and 1994 Year Total episodesc Type of organization State and county mental hospitalsd (%) Private psychiatric hospitals (%) Nonfederal general hospitalse (%) VA hospitalsf (%) All other mental health organizationsg (%) Total (%)

Inpatienta Outpatientb 1955 1994 1955 1994 1.3 million 2.5 million 379 thousand 7.0 million 63




9 21 7 0

23 44 9 12

0 0 11 80

9 13 4 73





Source Data are from Witkin and colleagues [15] aInpatient refers to services provided in a 24-hour. Care setting such as a hospital or residential treatment or supportive setting bOutpatient refers to services provided in less than 24-hour. Care settings and not overnight by freestanding outpatient psychiatric clinics, partial care organization, and multiservice organizations cFor each type of organization an episode is defined as the composite count of its resident patients or active cases at the beginning of the year plus the annual additions (admissions or new cases) during the year dState and county mental hospitals are defined the same as in Fig. 2.1 eThis category includes only nonfederal general hospitals with separate psychiatric units. General hospitals with scatter beds are not included in these counts fIncludes Department of Veterans Affairs (formerly Veterans Administration) neuropsychiatric hospitals, VA general hospital psychiatric services, and VA psychiatric outpatient clinics gOther mental health organizations are agencies that are not licensed hospitals including freestanding outpatient psychiatric clinics, partial care organization, and multiservice organizations

2.5 Challenges of Mental Health Fragmentation The disjuncture between the needs of persons with SMI and fragmentation of functions, responsibilities, and resources in the community care system that became so glaring in the 1980s led to a variety of efforts to integrate or bundle mental health and welfare services in a more accessible, effective, and efficient way. In many respects, these efforts were attempts to impose on an unwieldly division of labor the sort of centralized management and coordination of care that state hospitals had once performed for their residents. The shift in the locus and auspices of these functions away from state hospitals led to a diversified service system wherein one entity was no longer in charge. Here, following Mechanic [35], we consider three integration strategies that gained wide attention and implementation in the 1980s and 1990s:

2  Division of Labor: Function Shifts and Realigned …     31

assertive community treatment (ACT), local mental health authorities, and managed behavioral health care. ACT represented integration at the clinical service level whereas both local authorities and managed care represented integration at the delivery system level for the management and financing of services within cities, counties, or entire states.

2.5.1 Assertive Community Treatment ACT, an evidence-based practice for persons with severe and persistent mental illness, has been intensively studied over the past four decades to determine whether it is effective, for whom, and under what circumstances. Key components of the model include a mobile, multidisciplinary team with a psychiatrist and a psychiatric nurse; a shared caseload among team members; direct service provision by team members; a high frequency of consumer contact; low consumer-to-staff ratios; and round-the-clock outreach in the community [36]. ACT can be thought of as a hospital without walls due to its multiple and intensive services under the supervision of a multidisciplinary team. It was developed for consumers with SMI who have significant difficulty with independent living, high service needs, and repeated psychiatric hospitalizations. Since the early 1970s, more than two dozen randomized trials have been conducted throughout the United States and abroad to evaluate the effectiveness of ACT [37]. Most of the early US trials found that ACT did not consistently reduce symptoms and improve quality of life. However, ACT was effective at engaging hard-to-reach consumers, improving housing stability, and reducing hospitalization [38]. The evidence for ACT as an effective alternative to psychiatric hospitalization led to its gradual dissemination throughout the United States, Canada, Western Europe, and Australia. Over the years, ACT has become a platform for leveraging other evidencebased practices such as integrated dual disorders treatment [39] and supported employment [40]. In response to the large numbers of people with SMI in jails and community probation, forensic versions of ACT (or FACT) have been developed in communities across the United States. Recent evidence suggests that these programs can be effective in reducing criminal justice involvements [41, 42]. Despite early evidence of effectiveness, ACT experienced slow dissemination and implementation to other communities that had funding, sociopolitical, and clinical arrangements different from its Dane County, Wisconsin origins [35]. Little consideration had been given to the intensity of staffing and per-patient costs required to carry out assertive and continuing care

32     J. P. Morrissey and H. H. Goldman

activities either in large urban or rural areas [43]. Dissemination accelerated in the 1990s following the demonstrated successes of ACT in clinical trials, strong endorsements from the National Alliance for the Mentally Ill, expanded Medicaid coverage, and from the development of a standardized ACT model and accompanying fidelity measure [44]. ACT also became one of the cornerstones of the evidence-based practice movement [45]. These efforts expanded ACT teams throughout the United States, often on a statewide basis in places such as New York, Indiana, North Carolina, and Washington. An important development during this period was the growth of recovery-oriented approaches to community care for persons with SMI [46]. Soon, ACT teams began to embrace many of these recovery principles [47]. Recent research in Washington State has demonstrated that patients receiving care from several newly deployed ACT teams that incorporated recovery-oriented practices had lower rates of hospitalization than usual care controls [48]. Early on, ACT seemingly offered hope of becoming a system-wide framework to solve many of the problems of fragmentation and segregation that characterized the mental health system in the post-deinstitutionalization era. After over four decades of experience both domestically and internationally and despite its demonstrated successes, this vision has not materialized. ACT has proven to be relevant for a segment rather than the entire population of people with a SMI. Not everyone with a SMI needs this level of intensive care. ACT continues to be one of the most effective interventions for avoiding hospitalization but it is expensive, and to deploy it efficiently, it must be carefully targeted to those most in need.

2.5.2 Local Mental Health Authorities The idea of a local mental health authority was the central focus of the Robert Wood Johnson Foundation Program on Chronic Mental Illness which funded nine research demonstration sites from 1987 to 1992 to test this idea [49]. The assumption was that the lack of accountability and organization within the mental health system made it difficult to meet the needs of persons with SMI so that a single entity had to be created to assume system-wide responsibility for the clinical, fiscal, and administrative aspects of care. In this sense, it moved design thinking about a viable division of labor in community mental health from clinical level interventions up to the system management level. In the view of Miles Shore, the Harvard psychiatrist who served as a director of the program, the local authority was

2  Division of Labor: Function Shifts and Realigned …     33

attempting to create within a community-wide system of services the kind of centralized control, coordination, and accountability found in wellfunctioning mental hospitals. The underlying logic of the demonstration was that improvement in coordinated services at the system/provider level would translate into service improvements at the client level, leading in turn to better client outcomes [50]. Concurrently, an evaluation was conducted to assess the success of the demonstration in establishing local authorities, achieving system improvement goals [51], and improving client outcomes [52]. The results indicated that while viable local authorities were established in most sites [50], and while improvements did occur in service accessibility and housing access [53, 54], there was no detectable improvement in outcomes across multiple domains between cohorts of early versus later enrollees in any of the cities [52]. Similar results were found in an evaluation of the Ft. Bragg systems of care demonstration for youth with serious emotional disturbances [55]. These findings put a damper on national efforts to improve mental health system performance as it appeared that centralizing authority and improving access to rehabilitation, housing services, and other system enhancements did not lead to improved client outcomes. This conclusion led to much soul searching among researchers, providers, and policy makers as to what next steps might improve the lives of people with SMI. The RWJF and Ft. Bragg demonstrations both focused on coordination and intensification of existing services without a well-specified clinical intervention capable of reducing the severity of symptoms and functional disability associated with their respective target conditions of SMI and serious emotional disturbance. In retrospect, since these demonstrations lacked an effective clinical intervention, both study comparison cohorts were essentially exposed to usual care services from which no consistent outcome improvements could reasonably be expected. An opportunity to test and refine this clinical intervention hypothesis emerged in the late 1990s with the Access to Community Care and Effective Services and Supports (ACCESS) demonstration for homeless mentally ill individuals sponsored by the Center for Mental Health Services at the Substance Abuse and Mental Health Services Administration (SAMHSA) [56]. Two communities in each of nine states participated in a five-year quasi-experimental study. Ethically, evidence-based services could not be randomized between sites so both in-state sites were funded over a five-year period to establish a comprehensive treatment program, including an ACT team, to serve four successive cohorts of 100 homeless mentally ill persons, each for a 12-month period and then to transition them to regular services.

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One site selected at random (integration site) received additional funding to develop systems integration strategies while the other (enhancement site) did not receive such funds. In this way, the ACCESS program sought to assess whether there was any value added, in quality of life and other psychosocial outcomes, by providing comprehensive clinical services plus system integration versus comprehensive clinical services alone. The results mirrored those of the RWJF and Ft. Bragg demonstrations; although service system integration was associated with better access to housing and other supports [57, 58], there was no added benefit in clinical and psychosocial outcomes over and above what was accomplished by comprehensive services alone [59]. As the policy and research communities digested these findings attention began to focus more emphatically on client outcomes and interventions that could improve the lives of people with SMI. NIMH began to highlight improved outcomes as the primary purpose of its research and educational programs and more and more efforts were directed at identifying interventions that could make a difference in people’s lives. One of the efforts that emerged out of these concerns was the work of Robert Drake and his colleagues at Dartmouth, initially supported by the Robert Wood Johnson Foundation, to identify evidence-based practices that could be manualized and disseminated in everyday practice in a variety of mental health service settings [60].

2.5.3 Managed Behavioral Health Care Parallel to these efforts to integrate services and functions on behalf of persons with SMI, increasing attention in the 1980s was directed at the rapid growth of health insurance coverage for mental health care and concerns about uncontrolled costs and more efficient ways of integrating care while managing insurance benefits. A new managed care industry was born to control access to care, the types of care delivered, and the amount or costs of care. Managed care developed within the private healthcare sector initially through Health Maintenance Organizations [61] and other prepaid arrangements. The late 1980s and early 1990s saw a growth in mental health and substance abuse benefits being specified and managed separately from general health benefits in employer-sponsored insurance [62]. In these “carve-out” situations, a managed care organization was often used to arrange care and manage costs. Frank and Garfield [63] point out that the diffusion of managed behavioral health carve-outs was stimulated by the rapid growth in spending on, and use of, inpatient services in both private psychiatric and general

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hospitals during the 1980s. Managing inpatient use and shifting treatment to less costly alternatives was the first order of business. Carve-outs offered health plans and other payers specialized expertise in psychiatric and addictions clinical care, care management protocols, as well as recruitment and management of behavioral health provider networks. Medicaid managed behavioral health care for persons with SMI has been the focus of ongoing research and evaluation over the past two decades. Much of the early work focused on the impact of carve-outs on costs and utilization but later evaluations have reported on quality and patient outcomes as well. Frank and Lave’s [64] assessment of early Medicaid carveouts in Colorado, Massachusetts, North Carolina, and Utah revealed significant cost savings ranging from 17% to 33%. Frank and Garfield’s [63] review of first-generation Medicaid carve-outs for mental health or substance abuse services also indicates that significant cost savings were achieved, primarily from dramatic reductions in use of inpatient psychiatric services and 30-day substance abuse treatment programs. Further, some of these studies reported across the board reductions in service use while others found shifts from inpatient to intensive outpatient services. Most of the studies also found that access either remained unchanged or increased under carve-out arrangements. Carve-outs have not escaped criticism, however. An Institute of Medicine report [65] identified a number of failings including unmet need for care, increased fragmentation in care delivery, compromised professional autonomy, constraints on care giving, greater bureaucracy and administrative costs. Perhaps the major charge was that carve-outs promoted fragmentation rather than integration of care especially between mental health and primary care providers. The report found that by carving-out behavioral care from a Medicaid healthcare plan a variety of administrative and clinical barriers interfered with communications between primary care and behavioral providers, disrupted referrals to carve-out providers, and failed to allow equitable reimbursements for time primary care providers spend with behavioral patients. Nonetheless, Frank and Garfield [63] argue that managed behavioral carveouts have evolved to address many of these shortcomings and, in doing so, have helped to overcome longstanding problems in mental health and addictions service delivery by shifting care from inpatient to outpatient, expanding access to treatment, and demonstrating that increasing access did not result in spending increases. The latter finding on the ability to control spending was a crucial step in advancing parity of coverage in private and public insurance for mental health and substance abuse services on a par with other medical

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conditions. Many of these gains benefitted people with depression and other less serious conditions enrolled in private insurance more so than those with disabling mental illness enrolled in Medicaid. This was especially the case for patients with complex medical and psychiatric conditions whose care more often encountered communication and coordination problems engendered by the separation of primary and specialty care under carve-out arrangements.

2.6 Newer Service Integration Initiatives: Collaborative Care, Medical Homes, and Medicaid Health Homes The separation of medical care and mental health systems in the United States has been a long-term concern for both policy makers and practitioners. Recognition that primary care physicians see large numbers of patients with mental and emotional problems have led to numerous efforts to educate physicians in the recognition and treatment of depression and other common mental disorders [66]. These efforts ultimately led investigators to conclude that recognition alone was not the main problem. Rather, the obstacle to treating mental illness with other chronic conditions in this setting was the way primary care itself was organized.

2.6.1 Collaborative Care A synthesis of successful disease management strategies led Wagner and colleagues [67] to develop the Chronic Care Model (CCM) as a framework for redesign of primary care practice. Conventional primary care is focused on acute conditions, brief appointments and triage, laboratory findings and prescriptions, with patient-initiated follow-up. Patients with chronic illnesses, in contrast, need regular monitoring by caregivers, functional assessments, prevention of exacerbations and complications, and support for their role as self-manager. The CCM stressed enhancing patient confidence and skills in self-management, reorganizing practice appointments and follow-up, using evidence-based guidelines, and tracking systems with reminders and performance feedback [68]. Initial applications of the CCM focused on chronic medical conditions such as diabetes and cardiovascular disease. Wayne Katon and Jurgen Unutzer and their colleagues [69, 70] adapted the CCM approach to

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formulate the Collaborative Care Model expressly designed for the treatment of depression in primary care. In this approach, a team consisting of a primary care physician, a care manager (nurse or social worker), and a designated psychiatrist-consultant manages the treatment of depression in the primary care setting. Stepped care is also a core component of the model whereby medication treatment is systematically changed, intensified, or “stepped-up” if patients are not improving as expected. In one of the largest controlled trials of Collaborative Care (IMPACT), 1801 primary care patients with depression and multiple chronic medical conditions from 18 primary care clinics in five states were randomly assigned to a collaborative stepped care program or to care as usual [70]. Results showed that IMPACT participants were more than twice as likely as those in usual care to experience a substantial improvement in their depression severity over 12 months. They also experienced less physical pain, better social and physical functioning, and better overall quality of life than patients in usual care. Subsequent studies have demonstrated the effectiveness of the IMPACT program and other variants of collaborative care with younger patients and those with a variety of psychiatric and medical comorbidities in diverse healthcare settings and financing arrangements [69].

2.6.2 Medical Homes The absence of financing mechanisms to compensate multiple providers involved in care coordination has been a major obstacle to the dissemination of integrated primary and behavioral health care from research demonstrations to everyday practice. Both the U.S. Mental Health Parity and Addiction Equity Act of 2008 and the U.S. Patient Protection and Affordable Care Act of 2010 combined to reduce this financing obstacle by requiring equitable insurance coverage and promoting patient-centered medical homes [71]. Under the Affordable Care Act, medical home provisions incorporate much of the Chronic Care and Collaborative Care Models while adding payment reform to include separate compensation for care coordination, consultation, and management [72]. Much of the behavioral health integration efforts within medical homes has focused on depression and other common mental disorders. Much less is known about how these models affect the patterns of care for persons with more SMI who typically receive much of their care from mental health

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specialists. This gap is especially concerning given the numerous reports about the extent of undiagnosed and untreated medical conditions among persons with who have a SMI. In the United States, people diagnosed with psychotic disorders such as schizophrenia die an average of 11 years earlier than the general population, typically due to co-occurring medical conditions such as chronic heart disease, diabetes, heart attack, high blood pressure, obesity, and stroke [73]. Up to 10% of individuals with schizophrenia die by suicide, often in the early years of illness [74, 75]. Clients of public mental health agencies are especially at risk of these disparities; unlike most other Americans they are less likely to receive care for these problems and more likely to die prematurely [76]. Domino and colleagues [77] conducted a case-control study of adult Medicaid enrollees in North Carolina with diagnoses of schizophrenia, bipolar disorder, or major depression showing that medical home enrollees had greater use of both primary and specialty mental health care, better medication adherence, and reduced use of the emergency department. However, better rates of preventive lipid and cancer screening were found only for persons with major depression. Further analyses of heterogeneous effects in different subpopulations revealed generally positive associations between medical homes and access to primary care, specialty mental health care, greater medication adherence, slightly lower emergency room use, and greater expenditures [78]. A related series of studies by the same research team on adult Medicaid enrollees with multiple chronic medical conditions with and without psychosis or depression has shown that medical home use was somewhat lower among those with diagnoses of depression and psychosis [79]. Those hospitalized were more likely to receive timely outpatient follow-up with a primary care provider but not with a mental health specialist [80]. For patients with diabetes and schizophrenia, medical home enrollment was generally associated with greater likelihood of receiving guideline-concordant diabetes care [81]. Further, frequency of use of primary care and specialty providers was examined to explore whether primary care settings have the potential to serve as a mental health home [82]. Findings indicated that patients with schizophrenia used specialty providers more often than primary care providers. Yet, medical home enrollment was associated with increased use of primary care as well as increased medication adherence suggesting that primary care-based medical homes could serve a care coordination function for persons with schizophrenia.

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2.6.3 Medicaid Health Homes The Affordable Care Act of 2010 created an optional Medicaid benefit for states to establish Health Homes to coordinate care for people with Medicaid who have chronic conditions including SMI and substance abuse. This authority essentially allowed for reverse integration, bringing medical care into behavioral health settings. Health Home providers are expected to integrate and coordinate all primary, acute, behavioral health, and long-term services and supports to treat the whole person. One argument supporting the idea of a specialty health home is that people with SMI usually receive treatment from specialty providers rather than primary care providers so their preferences and health needs are best met in specialty behavioral health settings [83]. Early research reports [84, 85] describe the variety of settings and organizational arrangements in which health homes have been created but outcomes of these efforts have yet to be reported. In one of the first clinical trials of a behavioral health home, Druss and colleagues [86] compared the quality and outcomes of care of a behavioral health home for patients with SMI with usual care. The home was developed as a partnership between a CMHC and a Federally Qualified Health Center with a nurse practitioner and nurse care manager located at the CMHC. Compared with usual care, the behavioral health home was associated with significant improvements in quality of cardiometabolic care, concordance of treatment with the CCM, and use of preventive services. The results suggest that although it is possible to improve quality of care for patients with serious mental illness and cardiovascular risk factors, interventions other than health care are required to improve the full range of outcomes in this vulnerable population. Much still needs to be learned about which health home models produce enduring improvements in both medical and behavioral outcomes. As with earlier innovations in community care and treatment, financing of health home collaborations is a crucial issue. In fact, a recent review of evidence-based integrated care studies [87] identified segregated medical and behavioral health payment practices as the single most common factor that prevented integrated program initiation, development, and sustainability. The current efforts by the Trump Administration and U.S. Congress to repeal the Affordable Care Act present considerable uncertainty about the sustainability of these innovations, and consequently, how soon a sustainable behavioral healthcare system will emerge in the United States.

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2.7 Conclusion The landscape of the public mental health services system has undergone profound changes in the past several decades from a highly centralized, state mental hospital system to a highly decentralized and diversified mosaic of public and private providers, purchasers, and payers. Functions once performed exclusively by state mental hospitals have been shifted to other service settings and new functions created by technological and treatment advances have spawned newer types of agencies and practitioners to serve various segments and needs of persons with serious mental illness. Growth in the direct services sector was matched by a rapid proliferation of government administrative entities at municipal, county, state and federal levels as well as the spread of dozens of advocacy organizations promoting improved care and well-being for persons with mental illness. The resulting expansion and complexity of the public mental health system has created obstacles to unified management and consistent policy directives. No longer is there a single authority or funding stream to prioritize and direct collective efforts to improve the functioning and welfare of persons with serious mental illness. Different and uncoordinated funding sources each with their own mission and mandates push and pull intervention efforts in different directions. While the decentralization of authority and influence has opened more avenues for exploration and innovation in treatment and social support, it has impeded the implementation of system-wide policies and practices. Coherent and comprehensive public financing for the care and treatment of persons with SMI remains an elusive goal. In contrast, the prospects for a unified and integrated medical and behavioral healthcare system appear much brighter for people with less serious mental disorders, many of whom have private insurance benefits. Even with future advances in drug treatments to alleviate or better control symptoms of SMI, the challenges of reversing associated functional disabilities may well remain. Half-way cures will necessitate continued reliance on supported housing, employment, income maintenance, and other opportunities for social and personal recovery. In these ways, the well-being of people with SMI will continue to be shaped as much by social welfare policies and provisions as by developments in psychiatric practice.

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73. Druss, B. G., Zhao, L., Von Esenwein, S., Morrato, E. H., & Marcus, S. C. (2011). Understanding excess mortality in persons with mental illness: 17-year follow up of a nationally representative U.S. survey. Medical Care, 49(6), 599– 604. 74. Meltzer, H. Y. (2001). Treatment of suicide in schizophrenia. Annals of the New York Academy of Sciences, 932(1), 44–60. https://doi. org/10.1111/j.1749-6632.2001.tb05797.x. 75. Palmer, B. A., Pankratz, V. S., & Bistwick, J. M. (2005). The lifetime risk of suicide in schizophrenia: A reexamination. Archives of General Psychiatry, 62(3), 247–253. 76. Colton, C., & Manderscheid, R. (2006). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease, 3(2), 1–14. 77. Domino, M. E., Wells, R., & Morrissey, J. P. (2015). Serving persons with severe mental illness in primary care-based medical homes. Psychiatric Services, 66(5), 477–483. 78. Domino, M. E., Kilany, M., Wells, R., & Morrissey, J. P. (2017). Through the looking glass: Estimating effects of medical homes for people with severe mental illness. Health Services Research, 52(5), 1858–1880. https://doi. org/10.1111/1475-6773.12585. 79. Lichstein, J. C., Domino, M. E., Beadles, C. A., Ellis, A. R., Farley, J. F., Morrissey, J. P., … Jackson, C. T. (2014). Use of medical homes by patients with comorbid physical and severe mental illness. Medical Care, 52(Suppl. 3), S85–S91. 80. Domino, M. E., Jackson, C., Beadles, C. A., Lichstein, J. C., Ellis, A. R., Farley, J. F., … DuBard, C. A. (2016). Do primary care medical homes facilitate care transitions after psychiatric discharge for patients with multiple chronic conditions? General Hospital Psychiatry, 39, 59–65. https://doi. org/10.1016/j.genhosppsych.2015.11.002. 81. Oleisuk, W. J., Farley, J. F., Domino, M. E., Ellis, A. R., & Morrissey, J. P. (2017). Do medical homes offer improved diabetes care for Medicaid enrollees with co-occurring schizophrenia? Journal of Health Care for the Poor and Underserved, 68(11), 1197–1200. 82. Grove, L. R., Olesiuk, W. J., Ellis, A. R., Lichstein, J. C., DuBard, C. A., Farley, J. F., … Domino, M. E. (2017). Evaluating the potential for primary care to serve as a mental health home for people with schizophrenia. General Hospital Psychiatry, 47, 14–19. genhosppsych.2017.03.002. 83. Alakeson, V., Frank, R. G., & Katz, R. E. (2010). Specialty care medical homes for people with severe, persistent mental disorders. Health Affairs (Millwood), 29(5), 867–873. 84. Scharf, D. M., Eberhart, N. K., Schmidt, N., Vaughan, C. A., Dutta, T., Pincus, H. A., & Burnam, M. A. (2013). Integrating primary care into

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community behavioral health settings: Programs and early implementation experiences. Psychiatric Services, 64(7), 660–665. ps.201200269. 85. Krupski, A., West, I. I., Scharf, D. M., Hopfenbeck, J., Andrus, G., Joesch, J. M., & Snowden, M. (2016). Integrating primary care into community mental health centers: Impact on utilization and costs of health care. Psychiatric Services, 67(11), 1233–1239. 86. Druss, B. G., von Esenwein, S. A., Glick, G. E., Deubler, E., Lally, C., Ward, M. C., & Rask, K. J. (2017). Randomized trial of an integrated behavioral health home: The health outcomes management and evaluation (home) study. American Journal of Psychiatry, 174(3), 246–255. ajp.2016.16050507. 87. Kathol, R. G., deGray, F., & Rollman, B. L. (2014). Value-based financially sustainable behavioral health components in patient-centered medical homes. Annals of Family Medicine, 12(2), 172–175.

3 Economic Perspectives on the Organization and Governance of Mental Health Care Sherry A. Glied and Richard G. Frank

3.1 Introduction One of the key elements of mental health policy is the division of labor— the allocation of responsibilities—within the system of services designed to meet the needs of people experiencing a mental disorder. Until recently, the answer was simple. Mental health services began as entirely a personal and family responsibility and only in the eighteenth century did outside entities, such as private hospitals, or government institutions become involved. Since that time there has been considerable shifting in this division of labor and considerable evolution of roles and responsibilities in the governance of mental health policy. American mental health policy has been concerned with finding the right balance between the private and public sectors; determining the appropriate roles for federal, state and local government; and deciding when mental health policy should fall within the mainstream of health policy and when it should be treated in an exceptional way. The private sector and federal, state and local governments all play substantial roles in providing care and support to the population with mental S. A. Glied (*)  Robert F. Wagner Graduate School of Public Service, New York University, New York, NY, USA R. G. Frank  Department of Health Care Policy, Harvard Medical School, Boston, MA, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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illness. Private health insurance is the source of financing for mental health treatment for the majority of the population and pays for the plurality of expenditures [1, 2]. Primary care practitioners, private practice clinicians, and nonprofit hospitals provide most of this care. Local and state governments finance a portion of mental health care; they also regulate private sector insurance provision. Many localities also operate mental health clinics, while states operate public mental hospitals and regulate the mental health professions. Local and state governments operate police forces, courts, and jails and prisons, which control some actions and in turn limit the autonomy of some people with mental illnesses. Finally, the federal government plays an important role in financing insurance. It also finances cash and other transfers, often in collaboration with the states, as well as financing community-based treatment through the mental health block grant. Federal courts and Federal legislation establish laws and regulations that govern insurance (such as the Mental Health Parity and Addiction Equity Act, MHPAEA PL 104–204 [3]) as well as protect the autonomy of people with mental illness (such as state laws setting forth the rules for involuntary hospital admission). The Federal government provides services directly only to small subsets of the population (such as through the Veterans Health Administration). Evidently, the supply side of the mental health system— the production and regulation of the goods and services used by people with mental illness—is a complex and busy space. Three features of this complexity stand out. First, the institutional organization of the system that treats and addresses the needs of people with mental illnesses is far more complex, and gives large roles to more different actors, than the comparable organization of the systems that address the problems of people with other types of health conditions. Broadly, state governments (and to a lesser extent local governments), relative to either the federal government or the private sector, hold a much larger share of the fiscal and regulatory responsibility associated with mental health than associated with physical health [4]. Second, the relative weights of these various institutional actors within mental health have changed over time. Over time, the allocations of responsibility for mental health and the rest of health have become more similar [5]. Continued progress toward the goal of integrating care for mental and physical health would create further convergence of fiscal and regulatory responsibility. Third, today, many of the services people with mental illnesses receive are financed and delivered through “mainstream” institutions that also provide similar services to people with other health conditions, rather than through “exceptional” institutions that serve only those with mental illness.

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Much research and discussion in mental health policy concerns a set of “what” questions—what services should be provided? What level of insurance coverage is appropriate? But a parallel set of important questions focus on institutional design and asks questions about how policy responsibilities for the delivery and financing of services provided to people with mental health needs should be allocated. Three broad dimensions of these institutional design questions are: (1) the extent to which responsibilities for addressing mental health conditions should lie largely with the public sector or be explicitly devolved to (or implicitly left to) the private sector; (2) within the public sector, which responsibilities should be allocated to the federal government and which to subsidiary state or local governments; and (3) whether people with mental illness are best served by mainstream or exceptional institutions. The allocation of institutional responsibilities for addressing mental health is a response to the characteristics of these illnesses and of the societies in which they occur. Changes in these illnesses, in the technologies of treatment, or in the broader society, in turn, may lead to changes in the allocation of these responsibilities.

3.2 Mental Illness and Institutional Roles The term “mental illness” encompasses a broad range of disorders that, as a group are quite prevalent, with about 1 in 5 American adults experiencing a disorder each year. The treatment needs for most people in this group are that mental health services exist and can be paid for. Within this larger group, a much smaller share, about 4.1% of adults, experience a disorder that causes “serious functional impairment which substantially interferes with or limits one or more major life activities” [6–8]. Many people experiencing these more serious disorders will likely need supports over and above affordable access to mental health services. They will also need help with daily life—including affordable housing, supported employment, and negotiating the mundane tasks most Americans take for granted. A still smaller subset may behave in ways that create difficulties that extend to the larger community. These people may depart from community norms of conduct, be threatening and dangerous, or be so impaired that they neglect themselves to the extent that there is a significant likelihood that they would harm themselves. They may also be more likely to reoffend or violate parole or probation terms. Society may respond to these behaviors and the inability to control them through some combination of social controls and interventions aimed at preserving the person’s autonomy.

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One consequence is that people with mental illness are disproportionately represented in the jail and prison populations [9, 10]. While people with very serious impairments pose a particularly difficult set of challenges, several salient features of less serious mental illnesses also have implications for the design of institutions. Many mental disorders initially manifest themselves in childhood or early adolescence and often are chronic [7, 11, 12]. These features limit the ability of people to s­elf-protect against later costs through savings or the purchase of private insurance policies. They also make it difficult for competitive insurance markets to ensure coverage of mental health services, because insurers have incentives to avoid patients who anticipate needing these services and therefore they have predictably higher costs [13]. Early onset of mental illnesses can also compromise the ability to accumulate human capital through education and training, which in turn limits labor market outcomes and ultimately economic circumstances. By their nature, mental illnesses affect cognitive functioning. Mental illness is associated with reduced employment and income, making it challenging for people with such illness to be able to afford the care they need. People experiencing an acute mental illness may be poorly situated to make immediate decisions about their care. The limits of individual decision-making in this area are compounded by the effects mental illnesses have on others, including within families. For example, parental mental disorders may have negative consequences for children [14]. The presence of these external effects may mean that individuals will tend to under-value the benefits of treatment and thus demand for treatment is less than the level of treatment that may be optimal for the family or for the society. For all these reasons, both the most severe and many of the less serious forms of mental illness are associated with higher rates of poverty. For example, the poverty rate among people with mental illnesses was between 25% and 32% in 2015; while the rate of the US population overall was 12.7% in 2016 (authors’ tabulations of the National Household Survey of Drug Use and Health for 2015 and [15]). These features of mental illnesses, some of which are distinctive and some of which are more severe manifestations of problems that also occur with other health conditions, demand a range of institutional responses. To meet the clinical treatment needs of people with mental illness, there needs to be an institutional response to ensure financing and access to care. Since poverty is often a consequence of mental illness, there needs to be an institutional response that gives people with these conditions the financial means (whether at the moment an illness occurs or over their lifetimes) to pay for treatment and, for those with severe illness, to obtain the resources

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needed to live their daily lives. For people with mental illness who exhibit the potential for inflicting harm on themselves or others, society needs to respond to these behaviors to protect individual and community safety.

3.3 Efficiency and Institutional Design How should these needs be met? An extensive literature in public economics and political economy focuses on the appropriate institutional allocation of governance functions among sectors (markets or governments) and among levels of government (federal vs. state or local). The starting point for the economic analysis of institutional responsibilities is to rely on competitive markets. Economics favors competitive markets because in most circumstances, individual people and firms know their own wants, needs, and capacities best [16]. By channeling information about preferences and capacities through prices, competitive markets make effective and rapid use of information to achieve efficient allocations of resources [17]. For many economic writers, this individual-centric view of the benefits of markets parallels ethical beliefs about the preeminence of individual rights and liberties. This preference for markets, however, depends on several conditions being met. In particular, for markets to dependably achieve the best possible outcomes given the existing distribution of resources, there must be a sufficient number of buyers and sellers, information about product quality must be symmetric (buyers and sellers have and can act on the same information), consumers must be rational, and actions of some parties cannot have effects on others (externalities or public goods) [18]. In the absence of all of these conditions, markets can fail to produce desirable outcomes. The characteristics of mental illnesses and their consequences described above suggest that there is a high risk of market failure in this sector of the economy. Many consumers cannot (because of their conditions) make rational choices; information, including information about the presence of chronic mental health conditions, is not shared equally among actors; severe mental illnesses are sufficiently rare that there may not be enough consumers to support competitive provision; and some aspects of mental illnesses generate external effects for families or the broader society [13]. These departures from the conditions required for well-functioning markets generate particular problems for the operation of mental health insurance markets. In particular, asymmetries of information between consumers and insurers can lead to adverse selection. Insurers (and by extension, people without mental health problems who seek coverage) can compete to avoid covering those who have

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these problems. This inefficient kind of competition can lead to the virtual elimination of a market for private insurance for mental health services [19, 20]. Moreover, even when markets work well, socially desirable outcomes under the theorems that favor competitive markets depend on an appropriate initial allocation of resources. From the perspective of mental health policy, this last point is particularly critical. Poverty is both a risk factor for and a consequence of mental illness and confers a significant disadvantage in market systems. Only governments, not markets, can redistribute goods and services to those who cannot purchase them from their own resources. Yet while market failures are ubiquitous in mental health, there are also many reasons (even in theory) for governments to fail. The regulatory power of government may be captured by a well-organized interest group, such as a narrow group of mental health professionals or the staff of a public hospital [21]. A small, concentrated group of voters may be able to gain benefits from elected officials at the expense of a large, diffuse group of citizens [22]. Political action in democracies can be painfully slow and can be deliberately impeded by lobbies who gain from the status quo. This makes government action a less desirable choice in areas where changes in supply or demand occur frequently, such as where organizational or treatment technologies are changing. Government’s redistribution activities also generate economic problems. Raising revenue through taxation may impose costly distortions on the economy [23]. Offering care at public cost may generate excess demand for services [24, 25]. Many of the conditions for government failure—well-organized provider groups; small, highly concentrated lobbies; high price-responsiveness to the availability of subsidized services—are clearly present in the mental health area. Finally, in the case of stigmatized conditions like mental illnesses, stigma is frequently transmitted through the political process and is reflected in public policies. The logic of the economist’s general partiality for the use of markets to allocate resources—the focus on individual preferences and on the information-signaling role of prices—also leads to a preference for devolving public authority to subnational units [26]. As Inman and Rubenfeld write in a recent review, “Federalism encourages an efficient allocation of national resources; it fosters political participation and a sense of the democratic community; and it helps to protect basic liberties and freedom” [27, p. 44]. Under federalism, citizens can vote with their feet, seeking out the communities where the allocation of taxes, benefits, and regulations best reflect their preferences. As in a market, both those seeking election within a community

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and the communities themselves compete with one another to best meet citizen demands [26]. This preference for local decision-making power, however, is not unlimited. Just as markets can experience failures, competition among local governments can be undesirable for many reasons. On the supply side, there may be economies of scale in the provision of services, so that smaller units find it much costlier to provide services than do larger ones [28]. For example, consider the large size of many public hospitals. Limited demand for a service, or the existence of economies of scale in its delivery, can also diminish the power of competition, because local areas may not have a sufficient number of competitors. For example, most jurisdictions would not have enough demand to support multiple competing mental health inpatient facilities, so local markets may not be an appropriate governance unit for such facilities [29]. The virtues of competition among jurisdictions can also easily turn into vices when the population in need of services is relatively poor, disadvantaged, or stigmatized [30]. Further, even if most people would like those with mental health needs to receive services and to be assured of civil liberties, many would prefer that others pay the taxes and that services be located far away from their own neighborhoods [28]. In effect, there are external benefits to other jurisdictions if one town or state provides excellent services to people with mental illness. On the other hand, both taxpayers and benefit recipients will also respond to differences among jurisdictions in the provision of services. Taxpayers may move to jurisdictions with lower taxes, while program beneficiaries may be drawn to jurisdictions with better services [26]. Together, taxpayer and recipient mobility, coupled with the positive externality of provision of care, mean that competition among jurisdictions can lead to an economically insufficient level of service provision for people who are poor, stigmatized, or otherwise disadvantaged. This process is, in some respects, the public competition parallel of the “death spiral” that can result from adverse selection in private health insurance markets. One solution to the problem of inefficient interjurisdictional competition, which preserves the role of subnational jurisdictions, is to provide federal subsidies to disadvantaged groups for the local provision of services [31]. Federal subsidies avoid the problem of taxpayer mobility, reduce the costs to jurisdictions of beneficiary mobility, and encourage local generosity in the provision of such services, generating positive externalities across jurisdictions.

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3.4 Modes of Government Action Governments can respond to the failures of markets through regulation, redistribution, or direct supervision. Governments can act as regulators of subsidiary actors (the Federal government can regulate states/localities or the private sector or individuals and states/localities can regulate the private sector or individuals). They can subsidize or finance services provided by subsidiary actors (the Federal government can subsidize state/local or private provision of insurance or services). Finally, governments can provide services directly. With respect to mental health, governments act in all three of these ways, and through both mainstream and policies of exceptionalism, by which we mean policies especially designed and managed around mental health issues. A mix of federal, state, and local government roles provide the framework of rights and penalties around the behavior of people with serious mental illness [see Chapter 7 in this volume]. Federal statutes, including the U.S. Constitution (with Supreme Court decisions, such as Olmstead v L.C.) and the Americans with Disabilities Act, are most important in protecting people with mental illness from loss of autonomy [32]. These are mainstream laws that have been applied to the particular situations of people with mental illness. Within the limits defined by the US Supreme Court, states are largely responsible for defining the standards for civil commitment—an exceptionalism policy—within each state. States may also require professionals treating people with mental illness to warn authorities if the patient appears likely to cause harm (duty to warn), again within limits set by Supreme Court decisions. Local governments promulgate and enforce most of the laws that govern disorderly and disruptive behavior. Federal and state governments also regulate insurance markets generally. They do so using mainstream policies (such as preexisting exclusion restrictions in the Affordable Care Act). They have also been active in addressing the unique failures in health insurance associated with adverse selection in markets for coverage of treatment of mental illnesses and substance use disorders [33, 34].1 Governments play an extensive financing role in mental health. The Federal government subsidizes the provision of mental health-specific services by states and local governments through the Substance Abuse and Mental Health Services Administration’s (SAMHSA) Community Mental Health Services Block Grant, which awards funds to state governments that in turn fund local programs that provide care and support for people with

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mental illnesses [5]. It finances and administers the Medicare program, a mainstream program that provides health insurance to those who become disabled after working for a significant period (40 quarters) or who are 65 or older. The Federal government and the states collaborate in financing the Medicaid program, another mainstream health insurance program. Lowincome people, particularly those with disabilities, are eligible to receive health insurance through the Medicaid program. The majority of funding for the program comes from the Federal government (63% overall), in the form of matching funds for state expenditures. The administration of Medicaid, however, falls largely to the states, within bounds set by the Federal government. The states, in turn, often rely on private insurers (managed behavioral healthcare companies) to deliver insurance benefits to Medicaid enrollees [35]. Medicaid epitomizes the complexities and potential of institutional design. The cascading subsidies in Medicaid help to alleviate the interjurisdictional competition that might lead local and state governments to skimp on the provision of services to disadvantaged people, such as those with mental health needs. States can then contract with managed behavioral health companies to provide coverage for mental health care within Medicaid, reducing the potential for adverse selection among managed care companies but increasing fragmentation and the costs of coordinating care. State administration of the Medicaid program allows (at least in principle) more flexibility for states to match program design to local needs and to the local infrastructure of health and social service provision. By delegating the administration and management of care to managed care companies, States can reduce some of the risks of government capture by powerful provider or institutional lobby groups. They can also take advantage of the private sector’s greater flexibility and rapidity in responding to changes in technology. The mix of institutional responsibilities for financing mental health services is replicated in the structures providing assistance with basic needs to people with serious mental illness. These programs are mainly mainstream programs, with benefit receipt conditioned on poverty or the inability to work, rather than on mental illness per se. The Supplemental Security Income (SSI) program, which provides income support to low-income people with disabilities, is financed mainly by the federal government (though many states supplement these benefits) but administered by states [see chapter 23 in this volume]. The Social Security Disability Insurance program, which provides income support to disabled people with substantial prior

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work experience, is financed entirely by the Federal government, although the disability determination process is administered by the states. The federal government pays the full cost of food stamp benefits, but states administer the program and share in the administrative costs. The federal government also pays for the bulk of housing support, but these funds are administered by local governments. Many states also fund dedicated supportive housing for people with serious mental illnesses. Finally, governments also operate as direct service providers. The Federal government both finances and operates the Veterans Administration Health System. Outside the VA, States play the dominant role in ensuring that mental health providers are available and meet quality standards. States regulate licensure of mental health professionals, ambulatory services, and hospitals. Despite the decades-long trend toward deinstitutionalization, states continue to operate inpatient mental hospitals. States and local governments operate most jails and prisons and oversee the treatment of people with mental illness in these institutions. They also operate police forces and courts.

3.5 The Evolution of Institutional Roles in Mental Health The current distribution of roles among actors, and between mainstream policies and policies of exceptionalism has evolved over time. This evolution has not been linear. Changes in ideas about treatment and in the country’s social, political, and economic circumstances have led to shifts back and forth among markets and governments at different levels and between different kinds of programs. For most of history, there were few treatments available for mental health conditions. Government actions with respect to people with mental illness were focused on meeting basic needs and addressing the social externalities of mental illness. State and local governments, rather than the federal government, played the dominant role [5]. Prior to the mid-1800s people with mental illnesses were commonly found living in jails and almshouse [36]. These arrangements did not involve what would today be called treatment of illness but rather served to provide subsistence and separation from the general public. Almshouse housed a range of people that were disabled or dependent for other reasons. This included elderly and infirm people, children, people with physical disabilities and people with mental illnesses among others. The almshouse were

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typically organized and financed by charitable organizations. Hospitals were, in many respects, extensions of the almshouse. They offered subsistence and some care for dependent populations. Hospitals were generally financed by local public funds as the vast majority of patients were nonpaying people living in extreme poverty. That is, care for people with mental illness, to the extent that it existed at all, was provided by mainstream, local institutions. Beginning in the mid-1800s, both the technologies of treatment and the broader social context began to change. There was a new sense that mental health conditions could respond to treatment and specialty mental hospitals began to be established to provide this so-called moral treatment. Moral treatment proponents believed that mental illnesses could be alleviated if patients were treated kindly and trained to control their symptoms and behaviors inside of specialty institutions. These early mental hospitals were publicly funded by state governments. They greatly improved the well-being of people with mental illness by offering humane and specialized care [36]. Unfortunately, proponents of moral treatment were not well-positioned to maintain standards in these institutions. The availability of decent services at low cost generated high demand, as theory would anticipate. The lack of an organized and powerful constituency lobbying for moral treatment led to budget cuts. Hospitals founded to provide moral treatment soon became custodial institutions that were eventually viewed as inhumane, costly and ineffective. Yet, these institutions, while they no longer offered treatment, did continue to address other needs—they provided some modicum of basic services for people with dementia and severe illnesses, and they continued to remove the sickest psychiatric patients from the mainstream of society [36]. The period following World War II brought further changes in mental health treatment and in the institutions of the broader society. An era of therapeutic optimism began based on the positive experiences of dealing with psychiatric problems that occurred on the battlefields. New psychotropic medications showed promising results. There was expanding awareness of the amount of untreated mental illnesses in communities across the nation. Together these developments suggested that many people currently living in the community needed care and could be successfully treated [36]. Meanwhile, private health insurance, mainly sponsored by employers, became widespread. By 1970, about 72% of the US population had some insurance coverage [37]. But private insurance did not meet the newly noted need for financing mental health treatment for two reasons. First, people with serious mental illnesses were rarely employed by a firm that offered insurance coverage. Second, even if they or their families did hold such jobs,

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the coverage that was available almost always excluded specialized mental health care, a consequence of concerns about adverse selection (and moral hazard) [13]. Insurers believed that offering mental health coverage would attract a chronically ill, costly population. Because mental health treatment was still relatively rare and specialized, insurers may have also anticipated that people without these conditions would have been unlikely to seek coverage that included these individuals. This growing appreciation of the need for mental health care, potentially as a way of reducing the need for costly custodial care, as well as the failure of the private insurance system to finance this care, generated a need for new ways to make care available to people in their home communities. State and local governments, which had provided most specialized care up to that point, were not quick to move in this new direction. While relatively isolated custodial facilities created concentrated lobbies, diffused community care had few organized proponents [5]. Offering care in the community might also have driven away local taxpayers. In consequence, in 1955, roughly 85% of all mental health care was publicly financed and directly provided in public mental hospitals, largely overseen by state governments [5]. Instead, three successive policy events bolstered the ability to care for people in the community by expanding the role of the federal government. The first of these was a new, exceptionalism policy, the passage of the Community Mental Health Centers Act in 1963. The Act effectively bypassed state resistance to creating local community-oriented treatment facilities by directing funding to localities and nonprofits. It was also disconnected from each state’s mental healthcare infrastructure [32]. The other two events, the creation of the Medicaid program in 1965, and the establishment of the SSI program in 1972, were mainstream policy changes [5, 38]. Medicaid (and Medicare) were part of the ‘‘War on Poverty,” Lyndon Johnson’s effort to expand social welfare programs to secure people from want. SSI was a late-breaking component of the same effort. For the most part, these programs did not pay much attention to people with mental illnesses, but they nonetheless had enormous consequences for this population. Medicaid was particularly influential because of its matching program and benefit design. It offered states an open-ended matching grant program, with federal matching rates that varied inversely with state per capita income. This created opportunities for states to leverage state mental health spending by orienting their programs to Medicaid eligible populations and covered services [38]. Medicaid benefit design also served to discourage use of public mental institutions and offered coverage for a variety of

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community-based treatments. The Federal matching structure of Medicaid reduced the incentive for states to race for the bottom by reducing funding for vulnerable (and possibly mobile) populations to discourage taxpayer flight. By 1986, state Medicaid spending, which paid for insurance that financed professional and non-specialty hospital care, approached the level of state spending on direct provision of care [38]. Throughout the 1970s, the market for private, employer-sponsored health insurance continued to grow. In many cases, however, this coverage continued to exclude or to severely limit mental health benefits. As economic theory suggests, insurers excluded these benefits because of the potential for adverse selection—they wanted to avoid enrolling people who anticipated they would likely need these services [13]. State governments then began to use insurance market regulations to mandate that private insurance include mental health services [33]. This shift reflected continued growth in the mainstream private insurance market and in interest in and availability of community-based providers. It was also helped by concerns that insurers were free-riding on government funding of Medicaid and state services by failing to cover mental health. Many States began to mandate that private insurers under their jurisdiction (those with fully insured products) include mental health in their benefit packages. Mandating mental health benefits proved insufficient to ensure that all those not covered by Medicaid would have access to mental health services at reasonable cost. Many employer plans were exempt from state regulation altogether (through the Employee Retirement Income Security Act of 1974 statute, which in a quirk of Federal law exempts self-insured plans from state regulation). States were cautious in imposing too many regulations on fully insured plans because of business concerns about insurance costs. Finally, many people with mental illness were uninsured altogether, a mainstream policy problem. While many states had considered expanding coverage to all uninsured people, the limits of state action under interjurisdictional competition meant that only Massachusetts had successfully done so, and only through a substantial infusion of Federal funds [39]. Once again, Federal action helped address state inaction. In 2008, the Federal government passed MHPAEA, which mandated that all but the smallest firms nationwide offer mental health benefits at parity. Two years later, the Affordable Care Act of 2010 (PL 111–148) used a multipronged approach to address many of the remaining problems. It required that all non-group insurance plans include mental health and substance use disorder care, so that virtually all Americans with insurance would have these benefits available to them [3].

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The Affordable Care Act also helped to address the problem of uninsurance and financial access to care. Under the Act, 34 states expanded Medicaid to large numbers of low income, single childless adults, many of whom had mental illnesses but who did not qualify for disability-based insurance. The Affordable Care Act also made subsidized private insurance available to people with incomes above those that qualify for Medicaid under the Affordable Care Act. For those with incomes below 250% of the federal poverty line, a disproportionate share of whom have serious mental illnesses and substance use disorders, subsidies were available to cover the cost-sharing requirements in health plans. These expansions of coverage served to bring both greater financial security and access to treatment for low-income people with mental illnesses and substance use disorders [3, 40, 41]. Today, private insurance and Medicaid are the largest payers for mental health care—accounting for 60% of all spending [42]. The expansion of these mainstream programs has meant a shifting of responsibility for payment from state governments to the federal government and private insurance. In 2014, 61% of all spending was accounted for by public sources. The plurality of this public spending, 36% of all mental health spending, came from mainstream Federal sources, with just roughly 25% of the previously dominant state government [42]. Changes in treatment and organizational technologies, including an expanded array of psychotropic medications, a broader range of mental health service providers, and better computing and data availability have spurred the growth of a new organizational form. Private managed care organizations specializing in mental health treatment promised to organize and streamline access to care, often in return for a fixed prospective payment [43]. These arrangements make program costs to state governments more predictable in that they remove the per capita cost risk for the state and limit spending risk to that associated with enrollment. Contracting with managed care organizations represents an evolution in the state’s role, from provider to payer. It also injects an organization with specialized expertise into the mainstream Medicaid program. Together, these new programs generated financing streams for community care that did not depend on the benevolence of local taxpayers. By directing a large infusion of funding to mental health delivery and ensuring that disabled people living in the community could support their basic needs, these programs spurred the shift away from state psychiatric hospitals to life in the community that had been an objective of reformers since World War II [5]. These new programs created opportunities for people with severe mental

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illness to live in the community, rather than in isolated institutions. This also meant that communities would have people with serious mental illness living in them. Both sides of this change necessitated a reevaluation of how the government role in regulating behavior would change. In the 1975 case of O’Connor vs. Donaldson (422 US 563), the US Supreme Court held that, under the 14th Amendment, a state cannot confine someone who is not dangerous and who can survive in society either alone or with the help of willing friends or family members, simply because that person has a mental illness. Later, the Court, in its 1999 Olmstead vs. LC decision (527 US 581), determined that states had an obligation to treat those who did require involuntarily treatment in the least restrictive settings feasible. These Federal legal decisions mainly affected the behavior of state and local governments, which continued to play the dominant roles both in administering public insurance through Medicaid and in policing the behavior of people with mental illness. The requirements imposed by these laws place limits on how states can respond to the problems of interjurisdictional competition. States continued to perform their role of controlling disturbed, disturbing and dangerous behavior, but many did not provide comprehensive services and supports for people with serious mental illnesses. In effect, this meant that in many communities, mental illnesses were unintentionally criminalized. Community demands for protection have led governments to use jails and prisons to serve that community protection function. That represents a well-documented failure in American health and human services policy [44, 45]. Today while between 3 and 5% of the US population is affected by a serious mental illness, police reports suggest that 7–10% of their encounters are with people with a serious mental illness [46]. Likewise it is estimated that roughly 44% of people in jails have a history of mental illness and 17% have a current serious mental illness [47]. One set of policy responses has been to strengthen links between the justice system and the healthcare system. The specific mechanisms try to address both the need for and usefulness of treatment—while also recognizing that people suffering from severe mental illnesses can be resistant to treatment and will not voluntarily submit to care. Specialized mental health courts, training of police and active coordination between Medicaid, mental health providers and criminal justice authorities (sheriffs) in support of reentering ex-offenders with mental illnesses mechanisms are being used to create those linkages that use leverage to bring people in need of care that come into contact with law enforcement into treatment [see Chapter 17 in

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this volume]. In order to provide state and local government with more tools for addressing the links between serious mental illnesses and corrections, the federal government has expanded the ability to use Medicaid to assist in supporting reentry into communities following an incarceration. These efforts highlight the importance of local government institutions like jails, state institutions like courts, and federal-state programs like Medicaid that are necessary to address key institutional failures. Finally, the United States is in the midst of a policy debate regarding the proper balance between the degree of coercive and restrictive forms of treatment for people with serious mental illnesses and a high priority given to personal autonomy and the accompanying costs on individuals and the larger community of allowing people with mental illnesses to fail in attempting to enter the American mainstream [see Chapter 7 in this volume]. That debate permeates the design of policy with respect to the number of psychiatric beds, commitment statutes, investments in supported housing, supported employment and community-based programs for people with serious mental illnesses.

3.6 Conclusion The United States has been engaged in a struggle to find the proper role of government in addressing mental illnesses. This struggle is closely related to debates about the relative weight put on measures aimed at public protections often served by restricting the autonomy of people with serious mental illnesses versus care and support arrangements that promote maximal autonomy. American society’s commitment to guaranteeing access to health care for the least fortunate also figures in the consideration of the role of government. The past 65 years has largely been marked by uneven progress toward putting purchasing power for mental health care and supports in the hands of consumers living in community settings with the government playing an expanded role as payers and regulator of markets for mental health services. This evolution has been marked by far greater presence of people with mental illnesses participating in the mainstream of American life, it has also resulted in vexing failures as reflected most starkly in high rates of homelessness and the frequent criminalization of people with serious mental illnesses. These failures represent a de facto expansion of the role of government as a social control agent and also as a promoter of individual autonomy albeit without the necessary investment in care and supports. These tensions have reignited fundamental debates whether to invest more

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in restrictive treatment settings like psychiatric inpatient services or whether to focus more on community-based supports such as crisis interventions and expanded community-based programming. The following chapters in this handbook explore many of these debates and questions of great importance in American mental health policy.

Note 1. Requirements in Federal law mandate that all private insurance plans that cover mental health do so at parity (and most firms voluntarily choose to cover mental health treatment). State laws often require nonself-insured firms to offer mental health benefits.

References 1. Barnett, J. C., & Vornovitsky, M. S. (2016). Health insurance coverage in the United States: 2015. Washington, DC: US Government Printing Office. 2. Mark, T. L., Yee, T., Levit, K. R., Camacho-Cook, J., Cutler, E., & Carroll, C. D. (2016). Insurance financing increased for mental health conditions but not for substance use disorders, 1986–2014. Health Affairs, 35(6), 958–965. 3. Beronio, K., Glied, S., & Frank, R. (2014). How the Affordable Care Act and Mental Health Parity and addiction equity act greatly expand coverage of behavioral health care. The Journal of Behavioral Health Services & Research, 41(4), 410–428. 4. Glied, S., & Frank, R. G. (2016). Economics and the transformation of the mental health system. Journal Health Politics Policy and Law, 41(4), 541–558. 5. Frank, R. G., & Glied, S. (2006). Better but not well: Mental health policy in the United States since 1950. Baltimore, MD: Johns Hopkins University Press. 6. U.S. Department of Health and Human Services National Institute of Mental Health. (2015). Any mental illness (AMI) among U.S. adults. Retrieved from 7. Hedden, S. L. (2015). Behavioral health trends in the United States: Results from the 2014 National Survey on drug use and health. Washington, DC: U.S. Department of Health and Human Services publication: No. SMA 15-4927. 8. Kessler, R. C., Amminger, G. P., Aguilar-Gaxiola, S., Alonso, J., Lee, S., & Ustun, T. B. (2007). Age of onset of mental disorders: A review of recent literature. Current Opinion in Psychiatry, 20(4), 359–364. YCO.0b013e32816ebc8c.

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9. James, D. J., & Glaze, L. E. (2006). Mental health problems of prison and jail inmates. Washington, DC: U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics Special Report, NCJ213600. 10. Umberson, D., & Montez, J. K. (2010). Social relationships and health: A flashpoint for health policy. Journal of Health and Social Behavior, 51(Suppl.), S54–S66. 11. Organisation for Economic Co-operation and Development. (2012). Sick on the job? Myths and realities about mental health and work. Paris, FR: OECD Publishing. 12. De Girolamo, G., Dagani, J., Purcell, R., & Cocchi, A. (2012). Age of onset of mental disorders and use of mental health services: Needs, opportunities and obstacles. Epidemiology and Psychiatric Sciences, 21(1), 47–57. 13. Frank, R. G., & McGuire, T. G. (2000). Economics and mental health. In J. C. Anthony & P. N. Joseph (Eds.), Handbook of health economics (Vol. 1, Part B, pp. 893–954). New York, NY: Elsevier. 14. Rishel, C. W. (2012). Pathways to prevention for children of depressed mothers: A review of the literature and recommendations for practice. Depression Research and Treatment, 313689. 15. U.S. Census Bureau, Current Population Reports, P60-263. Income and poverty in the United States: 2017. U.S. Government Printing Office, Washington, DC, 2018. 16. Arrow, K. J., & Debreu, G. (1954). Existence of an equilibrium for a competitive economy. Econometrica, 22(3), 265–290. 17. Hayek, F. A. (1945). The use of knowledge in society. The American Economic Review, 35(4), 519–530. 18. Bator, F. M. (1958). The anatomy of market failure. Quarterly Journal of Economics, 72(3), 351–379. 19. Akerlof, G. A. (1970). The market for ‘lemons’: Quality uncertainty and the market mechanism. Quarterly Journal of Economics, 84(3), 488–500. 20. Rothschild, M., & Stiglitz, J. (1976). Equilibrium in competitive insur ance markets: An essay on the economics of imperfect information. Quarterly Journal of Economics, 90(4), 629–649. 21. Stigler, G. J. (1971). The theory of economic regulation. Bell Journal of Economics, 2(1), 3–21. 22. Olson, M. (2009). The logic of collective action: Public goods and the theory of groups, second printing. Cambridge, MA: Harvard University Press. 23. Ricardo, D. (1951). The works and correspondence of David Ricardo. Vol. 1 Principles of political economy and taxation [1817] (P. Sraffa, Ed.). Indianapolis, IN: Liberty Fund, 2005. 24. Rubinow, I. M. (1913). Subsidized unemployment insurance. Journal of Political Economy, 21(5), 412–431. 25. Pauly, M. V. (1968). The economics of moral hazard: Comment. The American Economic Review, 58(3), 531–537.

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26. Tiebout, C. M. (1956). A pure theory of local expenditures. Journal of Political Economy, 64(5), 416–424. 27. Inman, R. P., & Rubinfeld, D. L. (1997). Rethinking federalism. Journal of Economic Perspectives, 11(4), 43–64. 28. Oates, W. (1972). Fiscal federalism. New York: Harcourt, Brace, Jovanovich. 29. Glied, S. A., & Altman, S. H. (2017). Beyond antitrust: Health care and health insurance market trends and the future of competition. Health Affairs, 36(9), 1572–1577. 30. Rom, M. C., Peterson, P. E., & Scheve, K. F., Jr., (1998). Interstate competition and welfare policy. Publius: The Journal of Federalism, 28(3), 17–37. 31. Brown, L. D., & Sparer, M. S. (2003). Poor program’s progress: The unanticipated politics of Medicaid policy. Health Affairs, 22(1), 31–44. 32. Grob, G. N. (2014). From asylum to community: Mental health policy in modern America. Princeton, NJ: Princeton University Press. 33. Frank, R. G., & McGuire, T. G. (1990). Mandating employer coverage of mental health care. Health Affairs, 9(1), 31–42. 34. Frank, R. G., Koyanagi, C. & McGuire, T. G. (1997). The politics and economics of mental health ‘parity’ laws. Health Affairs, 16(4), 108–119. 35. Frank, R. G., & Garfield, R. L. (2007). Managed behavioral health care carveouts: Past performance and future prospects. Annual Review of Public Health, 28, 303–320. 36. Grob, G. N. (1994). The mad among us: A history of the care of America’s mentally ill. New York: Free Press. 37. Glied, S. A., & Miller, E. A. (2015). Economics and health reform: Academic research and public policy. Medical Care Research and Review, 72(4), 379–394. 38. Frank, R. G., Goldman, H. H., & Hogan, M. (2003). Medicaid and mental health: Be careful what you ask for. Health Affairs, 22(1), 101–113. 39. McDonough, J. E., Rosman, B., Butt, M., Tucker, L., & Howe, L. K. (2008). Massachusetts health reform implementation: Major progress and future challenges. Health Affairs, 27(4), w285–w297. 40. Sommers, B. D., Maylone, B., Blendon, R. J., Orav, E. J., & Epstein, A. M. (2017). Three-year impacts of the Affordable Care Act: Improved medical care and health among low-income adults. Health Affairs, 36(6), 1119–1128. 41. Kozloff, N., & Sommers, B. D. (2017). Insurance coverage and health outcomes in young adults with mental illness following the Affordable Care Act Dependent Coverage Expansion. The Journal of Clinical Psychiatry, 78(7), e821–e827. 42. Substance Abuse and Mental Health Services Administration (SAMHSA), U.S.D.O.H. (2016). Behavioral health trends in the United States: Results from the 2014 national survey on drug use and health (pp. 15–4927). Washington, DC: HHS Publication No. SMA. 43. Feldman, S. (Ed.). (2003). Managed behavioral health services: Perspectives and practice. Springfield, IL: Charles C. Thomas Publisher.

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44. Bradley-Engen, M. S., Cuddeback, G., Gayman, M., Morrissey, J. P., & Mancuso, D. (2010). Trends in state prison admission of offenders with serious mental illness. Psychiatric Services, 61(12), 1263–1265. 45. Steadman, H. J., McCarty, D. W., & Morrissey, J. P. (1989). The mentally ill in jail: Planning for essential services. New York: Guilford Press. 46. Deane, M. W., Steadman, H. J., Borum, P., Veysey, B., & Morrissey, J. P. (1999). Emerging partnerships between mental health and law enforcement. Psychiatric Services, 50(1), 99–101. 47. Prins, S. J. (2014). Prevalence of mental illnesses in US state prisons: A systematic review. Psychiatric Services, 65(7), 862–872.

Part II Contemporary Issues in Mental Health Policy: Treatment Interventions and Supports

4 What Is the Meaning of Recovery? Larry Davidson and Timothy Schmutte

4.1 Framing the Issue No one would be considered too blind to learn Braille. —William Anthony, Ph.D.

This profound quip from William Anthony, one of the leading figures in the so-called Recovery Movement [1], gets to the heart of one, relatively recent, meaning of the term “recovery.” It suggests that no one should be considered “too” mentally ill to be able to take advantage of opportunities to be supported in participating in meaningful activities of one’s choice. But this quip also suggests some of the complications involved in the use of this term in the mental health context, as recovery has traditionally involved being cured of the symptoms and impairments associated with serious mental illnesses. In other words, be cured of the mental illness first, and then you can participate in activities of your choice. The following chapter explores the multiple meanings this term has come to take on within the context of contemporary mental health policy and practice, along with the historical sources of the resulting confusion, prior to presenting the key questions currently facing the field. We then analyze the evidence that exists relevant to these questions, and conclude with practice, research, and policy recommendations for the future. L. Davidson (*) · T. Schmutte  Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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Throughout these considerations, it will be important for the reader to heed this sage caution from Anthony. Just as persons who are blind cannot be considered too blind to learn ways of compensating for this particular disability (for example, by learning Braille), we can no longer assume that persons with serious mental illnesses will be too seriously mentally ill to learn how to live well with a mental illness. The last half-century has seen increasing evidence to the contrary, and the increasing presence of such persons who are “in recovery” outside of psychiatric hospitals—yet inside of mental health systems in a variety of paid and unpaid roles beyond that of patient—poses substantive challenges to conventional policy and practice. In line with the call for system “transformation” made by the 2003 President’s New Freedom Commission on Mental Health [2], we will argue that adopting a recovery orientation still requires significant changes throughout the field. In its conventional, medical sense, the term “recovery” has been used in psychiatry for over 200 years since the birth of the discipline in the Moral Treatment era beginning near the end of the eighteenth century. In France, for example, Philippe Pinel was in fact fairly optimistic about the possibility of recovering from serious mental illnesses, estimating that about 90% of the patients who had entered his care within a year of the onset of their disorder, and who had not been treated previously in other asylums, would recover fully. This was apparently the case regardless of how severe the disorder may have appeared to be on presentation during an acute episode, as he wrote: One cannot ignore a striking analogy in nature’s ways when one compares the attacks of intermittent insanity with the violent symptoms of an acute illness. It would in either case be a mistake to measure the gravity of the danger by the extent of trouble and derangement of the vital functions. In both cases a serious condition may forecast recovery, provided one practices prudent management. [3, p. 729]

In Germany, Emil Kraepelin focused attention on differences in the course of psychotic illnesses. He suggested that progressive deterioration resulting in a premature overall state of “feebleness” was one of the “invariable and permanent fundamental features” of some mental disorders, while other disorders did not follow a uniformly downhill course. That condition characterized by a downhill course he called “dementia praecox” (early onset of cognitive decline and memory impairment) and has since come to be called schizophrenia. However, even Kraepelin noted at the time that “the prognosis, however, is really by no means simple … improvements are not at

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all unusual, which in practice may be considered equivalent to cures” [4, pp. 26, 28–29]. Upon closer reading of his work, we find that about 30% of the patients he diagnosed with “dementia praecox” were either able to recover fully or to “improve sufficiently so that they are able to return to their homes or to their full liberty” [5, p. 274]. All the same, Kraepelin remains associated with the persistent idea that schizophrenia has an inevitable deteriorating course. More recently, beginning in the late 1960s, there have been several longitudinal studies that confirmed that this form of recovery is possible for some percentage of persons diagnosed with schizophrenia. The percentage varies across studies—based on a combination of diagnostic, symptom, and functional criteria, length of follow-up, and sociocultural environment—but typically lies between these extremes of 90 and 30%, most settling around 67%, or two-thirds of a given study sample [6–10]. So, for as long as we have had the concept of serious mental illnesses as medical (psychiatric) conditions, we also have had a concept of “recovery” from these disorders. Yet, while extensive research has been conducted to identify factors that promote this type of recovery (for example, with affective symptoms, later and acute onset, and responsiveness to medication being associated with better outcomes [6]), our understanding of when and how such recovery occurs remains very limited. Our limited understanding of recovery may be due perhaps, at least in part, to the length of time it takes to recover (that is, recovery rates increase with age). So little is known about what promotes recovery that services and service systems continue to be challenged to move beyond a neoKraepelinian model in which the best outcome that can be hoped for is one of “maintenance” in the community. Otherwise, we would not likely continue to view serious mental illnesses as chronic conditions, which we expect to be disabling for long periods of time, if not permanently. In other words, Kraepelin’s fundamental pessimism about outcome, despite his observation that “improvements are not at all unusual,” continues to color our understanding of the nature of mental illnesses—particularly those that involve psychosis—and the prospects of persons suffering from them. For the decades since passage of the State and federal legislation that inaugurated deinstitutionalization, many clinicians and managers alike have claimed that they simply do not see people recover. The accumulating evidence about the broad “heterogeneity” in outcome among persons with psychosis [11], both across domains of functioning within individuals over time and across individuals [12], appears to have had limited impact on models of care, approaches to rehabilitation, or the design of care systems.

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That picture is now beginning to change, and it is changing with the introduction of a new meaning of the term “recovery.” In contrast to the traditional, medical meaning that refers to recovering from a mental illness— what, following Slade, we will designate as “clinical recovery” [13]—this new meaning of the term recovery was suggested by persons “in recovery” themselves; persons, that is, who were living with serious mental illnesses. This form of being “in recovery”—what, again following Slade, we will label “personal recovery” [13]—does not require cure or the cessation of all psychiatric symptoms and functional impairments. It actually makes most sense within the context of on-going difficulties, as otherwise the person could be considered recovered in the clinical sense. While enjoying a longer history in the self-help/mutual support community of persons in addiction recovery (for example, Alcoholics Anonymous), this form of recovery appears to have first been introduced into mental health by Patricia Deegan, Ph.D. She is a clinical psychologist who had been diagnosed with schizophrenia as an adolescent but who has since become an international leader, and poet laureate, of the Recovery Movement. In her 1988 article entitled “Recovery: The lived experience of rehabilitation,” Deegan made a distinction between having recovered from a mental illness and being in an on-going process of recovering. She wrote: Recovery refers to the lived or real life experience of people as they accept and overcome the challenge of the disability … they experience themselves as recovering a new sense of self and of purpose within and beyond the limits of the disability. [14]

This concept of recovering as a “lived experience” of regaining a sense of self and a meaningful life “within and beyond” the disability appears to have hit a nerve with many people, both persons with mental illnesses and the practitioners and researchers who work with them. It was reaffirmed and expanded upon significantly by Anthony in the years that followed as a guiding vision for psychiatric rehabilitation (for example [15]), and was promoted heavily by the leaders and constituents of the Mental Health Consumer/Survivor Movement (for example [16]) out of which it had emerged as representing the reality, and aspirations, of their lives in the post-institutional era. The true heterogeneity of serious mental illnesses may have remained somewhat hidden from clinicians (many of whom had learned from Krapelian-oriented textbooks and, in practice, typically saw people only when they were ill) [17]; just as it has eluded researchers who limited their

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studies to cross-sectional or short-term follow-up designs. Heterogeneity of outcomes and course of illness were already consistent with the experiential reality of persons living with serious mental illnesses outside of hospitals. These people had first-hand experience of the episodic, interactive nature of exacerbations and periods of relative stability and the fact that impairments or anomalies in one domain (for example, symptoms) did not necessarily affect or translate into difficulties in other domains (for example, work, relationships), and many of them became less disabled, or had fewer disruptions, in their lives over time through incremental, but nonlinear, processes. While these aspects of the course and outcome of serious mental illnesses had been discovered and discussed by such clinical researchers as John Strauss and William Carpenter as early as the 1970s [18–21], this body of research had yet to replace the neo-Kraepelinian, all-or-nothing view of cure and its relative impossibility. It was picked up, however, by persons in recovery themselves, who found this research to be a more accurate reflection of their lives, and by some sympathetic practitioners, primarily in the relatively young field of psychiatric rehabilitation. Over the next two decades, innumerable definitions of this form of recovery were offered to complement and elaborate on Deegan and Anthony’s initial vision in an impressive proliferation, largely limited to the English-speaking world, of efforts to turn what started out—in Anthony’s words—as a “deeply personal, unique process” that is different for each individual [15] into a more standardized and (relatively) consistent concept. While there had already been over 100 definitions proposed when Onken and colleagues published a review in 2007 [22], Slade and colleagues were able to identify 7431 publications related to this new form of recovery by 2012 [23]. If we take as our guide this more recent systematic review conducted by Slade and colleagues, we end up with a framework of five core categories of recovery processes that capture the most frequently cited constituents of the over-100 different definitions offered. These comprise what is proposed as the “CHIME” framework that involves connectedness, hope, and optimism about the future, identity, meaning in life, and empowerment (thus yielding the acronym CHIME). Two of these processes were already present in Deegan’s 1988 definition; that is, the recovering of a new sense of self and sense of meaning and purpose in life. The remaining components speak to the importance of supportive social relationships that can instill a sense of hope and optimism about the future, in which people are able to play an increasingly empowered, self-determined, role both in their on-going recovery and in their lives as a whole.

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The integration of these five elements provides a richer, more holistic picture of the challenges involved in figuring out how to live a whole life in the face of an on-going serious mental illness, while opening up a variety of opportunities and resources that can be offered in support of the person’s own efforts. These include making role models of the possibility of recovery (for example, “peers”) available to instill hope and provide encouragement, offering social support, and increasing access to, and provision of community-based (in vivo) supports for involvement in, meaningful activities and the pursuit of valued social roles through innovations in supported housing, employment, education, socialization, parenting, and spirituality (for example [24–29]). The value of these specific interventions, as important as they may be to promote this form of recovery, represent only the most obvious of the implications of this developing meaning of the term, however. In addition to the need for such focused interventions, more far-reaching aspects of this form of recovery were identified as early as 1999 in the U.S. Surgeon General’s Report on Mental Health, in which we find the rather unambiguous conclusion that: “All services … should be consumer oriented and focused on promoting recovery … The goal of services must not be limited to symptom reduction but should strive for restoration of a meaningful and productive life” [30]. This bold statement is then not only reinforced, but also significantly elaborated, in the 2003 final report of the U.S. President’s New Freedom Commission on Mental Health, in which this form of recovery is defined as: “the process in which people are able to live, work, learn, and participate fully in their communities” [2]. A first question for us to consider is thus what does it mean for all mental health services to be, in the terms of the 2003 report, “transformed” to be “consumer oriented and focused on promoting recovery,” when the meaning of recovery is defined in such nonclinical terms? In fact, following their convening of three consensus development conferences that involved stakeholders in further defining this form of recovery (first in mental health, second in addiction, and then finally in terms of a vision of behavioral health that integrated mental health and addiction), the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) arrived at the following definition in 2010, describing recovery as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” [31]. Note that these definitions do not only assert that mental health care “not be limited to symptom reduction but should strive for restoration of a meaningful and productive life.” Were that the case, it might be simply

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a matter of combining conventional clinical care (that is, to reduce symptoms) with rehabilitation and the provision of community-based supports such as supported housing and employment (that is, to restore “a meaningful and productive life”). Rather, the SAMHSA definition, like most of the 100 + definitions of this meaning of recovery in the English-speaking world, gives center stage to the role of living “a self-directed life”—spelling out perhaps more concretely what the Surgeon General intended by the term “consumer oriented.” As a result of these considerations, we appear to be left with a meaning of the term recovery which has become quite detached from any notion of cure arrived at through the administration of any particular types of treatments. Instead, we have a concept that emphasizes the decision-making capacity and role of the person with the mental illness or addiction and the importance of his or her personal aspirations. Prior to weighing the pros and cons of such a definition of recovery, let us consider the second result of SAMHSA’s consensus development process. Based on this definition, SAMHSA then went on to spell out the operational implications for the characteristics of the system transformation process that would be required to reorient behavioral health care to the promotion of this form of recovery. The following ten principles (slightly rearranged) were suggested for guiding the development of recovery-oriented care: • • • • • • • • • •

Recovery is based on respect Recovery emerges from hope Recovery is person-driven Recovery occurs via many pathways Recovery is supported by addressing trauma Recovery is holistic Recovery is supported by peers and allies Recovery is supported through relationship and social networks Recovery is culturally based and influenced Recovery involves individual, family, and community strengths and responsibility [31].

This list of principles clearly emphasizes the roles of the person with the condition him or herself, his or her peers, allies, family/loved ones, and communities in fostering recovery. Doing so may provide an important counterbalance to the historically paternalistic and medication-centric qualities of the mental health system against which the Consumer/Survivor Movement had protested. As a framework for mental health policy, however, this list

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raises several additional questions. For example, while symptom reduction and other clinical foci may remain one component of the overall picture (that is, one pathway individuals may choose to “improve their health”), this component is either simply assumed (that is, considered to be too obvious to need to be mentioned) or considered less necessary for or crucial to the provision of recovery-oriented care. The list also ignores, or at least fails to engage with, the social control function of psychiatry, which requires mental health professionals to intervene to protect communities, and persons with mental illnesses themselves, from the most deleterious effects of these conditions (for example, suicide and homicide). This omission, and the failure to grapple sufficiently with issues of risk, has led some critics to dismiss the notion of recovery-oriented care as anti-psychiatric and anti-medication at worst, or simply unrealistic or irresponsible at best (for example [32, 33]). In addition, while addressing trauma is mentioned, and could be taken to be an issue requiring clinical intervention, its inclusion in the list raises more questions than it answers. These questions include: Does everyone with a mental illness have a history of trauma? If so, did the trauma cause the mental illness, is the trauma a result of the person’s experiences of the mental illness and/or the stigma and discrimination associated with having a mental illness, and/or of the lack of a recovery orientation of the mental health system, or a combination of all of the above? Should trauma be absent or sufficiently addressed, would there be no further need for care? Can persons with what have previously been defined as “serious mental illnesses” recover a self-directed and meaningful life without the purported benefits of treatment and rehabilitation; that is, without recovering from the illness itself? We take up these, and other, questions in the following section.

4.2 Questions As a result of the developments described above, the mental health field presently has at least two distinctly different meanings of the term recovery, which unfortunately has led to a considerable amount of confusion in the field [34, 35]. The first, the notion of “clinical recovery” or recovering from the effects of a serious mental illness, has been found to occur more commonly than previously thought, but may happen over significant periods of time (that is, decades). It is only partially accounted for by the availability and effectiveness of treatment, and its nature is currently poorly understood, and outcomes are not possible to predict. The second, the notion of “personal recovery” or living a meaningful, self-directed life in the face of, or

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despite, a serious mental illness, is described as accessible to everyone and as providing a guiding vision for the transformation of all mental health care. This second recovery outcome appears to be attributed largely to the efforts of the person and his or her peers, allies, loved ones, and local community, leaving its relationship to conventional care unclear and raising basic questions about the nature of mental illness and, as a result, who is responsible for what and to whom. The following series of questions have emerged out of this confusion.

4.2.1 Will a Focus on Personal Recovery Provide an Excuse to Reduce Services and Blame Individuals for Their Own Poor Outcomes? As one example of such questions, concerns are being raised about the use of this new meaning of recovery as a neoliberal political justification for the cutting of funding for mental health services [36–38]. If recovery is the responsibility and unique, personal journey of the individual who is primarily to be supported by his or her peers and natural supports, then the argument for the necessity of funding for clinical and rehabilitative care is significantly weakened. In addition, the “failure” of an individual to recover can more readily be blamed on the person and his or her not taking responsibility for his or her recovery, or on his or her not trying hard enough to do so. Either of these dire consequences would of course be unintended and unanticipated from the perspective of advocates of this form of recovery, who might claim that decision-makers are confusing the two different meanings of the term. But these would be real and quite detrimental effects nonetheless.

4.2.2 How Does Personal Recovery Relate to SelfDetermination and Community Inclusion? A second example of a subset of questions pertains to the proposed central role of self-direction in personal recovery. Out of concerns that the term recovery was being co-opted by conventional mental health systems, which were seen as diluting its political origins in a social justice framework [39], some leaders of the Consumer/Survivor Movement argued that this term should be replaced by that of “self-determination.” Indeed, what early proponents of personal recovery were arguing for was a restoration of the rights

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both of personal sovereignty and of community inclusion for persons with serious mental illnesses, captured perhaps most effectively in their lobbying for passage of the Americans with Disabilities Act (ADA) in 1990. Deegan’s initial article, cited above, was published just two years prior to passage of this landmark legislation, and reflects what had been the key advocacy strategy of the Consumer/Survivor Movement in redefining serious mental illnesses as psychiatric disabilities. The point of this redefinition was to extend all of the civil rights and associated responsibilities of community life that were promoted for persons with physical and developmental disabilities to persons with psychiatric disabilities as well. As Deegan pointed out soon after the law’s passage, the Recovery Movement in this way derived its inspiration and conceptual framework in part from the Independent Living Movement of persons with physical disabilities, who had been successfully advocating for their civil rights since the early 1970s [40], along with the civil rights movements of persons of color, women, and the LGBTQ community which had been advocating similarly since the 1960s. It is within this historical context that we are to understand the emphasis in defining personal recovery on the person being afforded access to a self-determined life in the community, on a par with all other law-abiding citizens of a given (democratic) society [2]. But not all societies place such value on self-determination above and beyond other considerations. The Recovery Movements in the US, Canada, the UK, and Australia and New Zealand reflect the values of the White middle class, from which consumer/survivor leaders predominantly came. Such values are not shared to the same extent among communities of color in these same countries, nor are they necessarily shared by the more family oriented and collectivist cultures in the Eastern hemisphere. As the concept of personal recovery makes its way across the globe, it is likely to look different in different cultures relative to the importance and centrality of the role attributed to self-direction in the process (for example [41, 42]). In addition, in the process of securing the right to self-determination as central to this definition of personal recovery, this notion is increasingly being criticized for not appreciating as fully the importance of the associated right of community inclusion. Here, too, proponents of personal recovery are being faulted for overemphasizing the individualistic nature of the process, leading not only to potential cuts in funding and the blaming of individuals, but also to the neglect of the social determinants of mental health [43]. That is, to the degree to which recovery is equated with self-determination, we lose sight of the very real and material role of society in making it possible for people to occupy the valued social roles they seek. Recovery is

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not solely an individual journey [44], but is contingent on the availability of supportive others, adequate material resources (for example, housing and income), accessible and effective health care, and, for those with on-going disabilities, the provision of accommodations and community supports. The provision of such accommodations was the second major focus of the ADA, as its drafters understood that self-determination alone is not sufficient to secure community inclusion for persons with disabilities. For a society to ensure a full life in the community for persons with disabilities, various types of accommodations are necessary depending on the nature of the disability. Ordinarily, we may think of accommodations as such things as wheelchairs, wheelchair ramps, and bathroom handrails provided for persons with mobility impairments, Braille signs and service dogs for persons with visual impairments, and sign language for those with hearing impairments, all of which enable people with disabilities to access public spaces as much as possible like everyone else. An intriguing and promising result of the inclusion of psychiatric disabilities in the ADA is the question of what are analogous accommodations for persons with psychiatric disabilities? It would seem that focusing at least as much on such a challenging question— along with focusing on the various social and cultural determinants of mental health [42]—would be equally as important as the current singular focus on self-determination. It is little consolation to be afforded the right to self-determination if one does not have access to the people, places, and activities needed to actually pursue one’s self-selected interests and pursuits. The lack of such a focus in the development of the concept of personal recovery, and an evolving appreciation of the importance of social and cultural factors in enabling or forestalling recovery, may be taken to be one of the inspirations for the more recent emergence of the concept of “citizenship,” to which Chapter 10 of this volume is devoted.

4.2.3 What Is the Relationship Between Clinical Recovery and Personal Recovery? The field is facing several interrelated questions both about the various meanings of the term recovery and about the respective implications for policy and practice of each. With respect to clinical recovery, the field would benefit from a better understanding of what factors and processes promote it and how they can be made more accessible to and effective for persons who continue to struggle with existing treatments. How, in effect, could clinical

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recovery be expedited or sped up for those people for whom it currently requires decades before significant improvements become evident? How can mental health services and supports take more advantage of the heterogeneity that may exist across domains of functioning within a given individual, building on persisting strengths to enable the person to learn how to compensate for residual impairments? We suggested earlier that it is perhaps at this point—when clinical recovery appears to be at best a distant hope—that personal recovery becomes both necessary and possible. When we first introduced the term we mentioned that it might best make sense in the absence of clinical recovery, as it was defined initially as a process of reclaiming a sense of self and life of meaning within or beyond the limits of the disability. Should a given person recover fully from the illness and therefore have no disability, of what need would he or she have for engaging in a process of personal recovery? A young adult who suffers an initial episode of psychosis but who recovers fully and then goes several years without a relapse or exacerbation conceivably would have no need or use for such a form of (personal) recovery. While there may be some overlap between processes of personal recovery and the personal and social adaptations made by persons who experience clinical recovery after some more lengthy period of time, the concept of personal recovery appears to be most relevant for, and needed by, those persons who continue to face symptoms or functional impairments—those people who in Deegan’s terms live with a psychiatric disability [40]. A parallel within the context of addiction would be the case of an individual with a long-term dependence on alcohol for whom personal recovery involves being currently abstinent, but remaining at risk of relapse. In this case, we need to focus on the accommodations and supports that can be provided to persons disabled by the illness so that they may have as full a life as possible. To return to Anthony’s quip which opened this chapter, we need to ask: what might be the psychiatric analogy to learning Braille? What tools or strategies can be developed to enable people to live well in the face of an on-going, disabling mental health condition? Such questions point to relatively unexplored, and potentially quite rich, territories for exploration. Yet, as we have seen, more recent definitions of this form of recovery emphasize self-direction and addressing trauma more than they do living well with or overcoming psychiatric disability. In fact, they make no mention of disability at all. This fact raises a series of additional questions such as what, for example, does personal recovery have to do with mental illness or psychiatric disability? How does the “process of change” to which

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the SAMHSA definition refers differ from such processes that other people who do not have a mental illness engage in to “improve their health and wellness, live a self-directed life, and strive to reach their full potential”? If, as some recovery advocates argue, there is no such condition as a mental illness, then why is anyone considered to be “in recovery” at all? How is this form of recovery different from the concept of quality of life, which has its own intellectual lineage and associated proponents, measures, and body of research? For personal recovery to remain an influential concept in shaping mental health policy and practice, some connection back to mental illness will need to be maintained so that funding can be justified, services and supports can be provided, competencies for practitioners can be established and assessed, and quality can be measured, monitored, and improved.

4.2.4 What Are the Implications of Personal Recovery for Policy and Practice? The final domain of questions pertains to the implications of the concept of personal recovery for policy and practice. Both the Surgeon General and New Freedom Commission reports [2, 30] recommended substantive changes, not only in what mental health services should be provided but also the manner in which they should be provided. Assuming we are able to answer the myriad questions above, we still will need to figure out what it will take to transform mental health care to be “consumer-oriented” and to be effective in enabling persons with psychiatric disabilities to live well “within and beyond the limits of the disability.” What aspects of conventional mental health systems are to be retained, if perhaps offered in new and different ways, and what are the new aspects of mental health care that either have been or need to be developed to achieve this vision of full community inclusion for persons with serious mental illnesses? The next section addresses these questions.

4.3 Evidence Is there, in fact, any evidence that would enable us to determine whether or not the introduction of personal recovery—as a complement to clinical recovery—has improved the care, or, more importantly, the lives, of persons with serious mental illnesses over the last three decades? And what evidence exists thus far that would support the call for transformation to a recoveryoriented system of care?

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In this section, we will review existing empirical evidence regarding specific interventions that have been developed and/or evaluated during this period, ranging from supported housing and employment to peer support, person-centered care planning, and illness self-management. Prior to doing so, however, it is important to point out that the notion of personal recovery itself cannot be put to this same test. As noted above, the concept of personal recovery emerged from the Mental Health Consumer/Survivor Movement as a central part of a disability rights framework that was effectively articulated and legislatively established through passage of the ADA. The right to live a meaningful and as self-directed a life as possible within or beyond the limits of a serious mental illness is just that: a right. Passage of the ADA has guaranteed that, at least within the United States, persons with psychiatric disabilities enjoy the same rights to self-determination and community inclusion as persons with other forms of disability. While it remains a challenge for the field to develop the tools, environmental modifications, and accommodations needed to turn these rights into realities, there should be no question that such a challenge exists and needs to be tackled with resources and resolve.

4.3.1 Supported Housing Some progress has been made in this regard, of course, and we turn first to the most well-established and least contentious of these approaches to psychiatric rehabilitation. Although various forms of supportive/supported housing have been developed since the early days of de-institutionalization, the trend over the last three decades has been to move the field toward more independent models consistent with the emphasis on self-direction central to the American vision of personal recovery. This shift has been described as moving from a “train and place” model to a “place and train” model, with research demonstrating that the more gradual, skill-focused progression from more structured and artificial settings (for example, group homes to halfway houses to supervised, shared apartments) required more time and resources without generating any better outcomes than rapid placement in more natural settings with the provision of in vivo supports [25]. In the residential domain, this model, originally developed by Carling and colleagues in the 1980s [25, 45], has become best exemplified in the Housing First approach developed by Tsemberis and colleagues [46], which involves offering access to permanent supported housing to persons with mental illnesses as a precursor to, rather than as a reward for adhering to,

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mental health treatment. That is, instead of requiring abstinence from alcohol and other drugs and/or medication adherence as prerequisites to accessing housing, this model views housing as both a right and as an early avenue to engagement in additional services. A recent systematic literature review of permanent supported housing programs, like Housing First, demonstrate that these approaches are consistently preferred by consumers, prolong housing stability, and reduce use of emergency rooms and hospitalization as compared to more incremental approaches [47].

4.3.2 Supported Employment Similar strides have been made in the employment domain, where there has been an analogous shift from sheltered workshops, transitional employment, and interminable vocational skills training to rapid placement and the provision of in vivo supports in the Individual Placement and Support (IPS) model of supported employment (SE) [24]. An ever-growing body of evidence demonstrates the success of IPS in enabling adults with serious psychiatric disabilities to achieve competitive employment [48–51] as well as improving quality of life and well-being while reducing use of psychiatric care [52–54]. While critics of this approach have pointed out that IPS is able to generate on average only about $3000 of income per year for the 55% of those obtaining employment—far less than is needed for people to graduate from the disability entitlement system—this outcome far exceeds those of previous models of vocational rehabilitation. And while some other countries have experimented with the social cooperative model of integrated work settings and employee-managed businesses developed in Italy in the 1970s (for example [55]), this approach has not yet taken off in the United States.

4.3.3 Supported Living More Broadly Comparatively speaking, the body of research is considerably more limited for supported education, socialization, parenting, and spirituality. Nevertheless, preliminary studies suggest combined supported education and employment are beneficial for individuals experiencing first-episode psychosis [56–58]. Previous research also has showed the benefits of supported socialization [59, 60] and positive effects of supported parenting on both parental and child-related outcomes [61, 62]. We could find no empirical studies conducted to date on the topic of supported spirituality.

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4.3.4 Peer Support The area of program development and evaluation that has been the most identified with the Recovery Movement, and in which a considerable body of evidence has accumulated, is peer support. Although the hiring of persons who have recovered from a serious mental illness to serve as staff in psychiatric hospitals can be traced back to the earliest days of the Moral Treatment era [63], the idea that this practice can be used intentionally and explicitly to combat stigma and discrimination and to instill hope for recovery was first introduced in the late 1980s as an outgrowth of the Consumer/Survivor Movement [64]. Initially, persons in recovery—who have come to be referred to as “peers”—were trained and hired to provide conventional, community-based services such as case management or residential support. In this capacity, they were found to perform at least as well as the non-peer paraprofessional staff who had historically occupied such positions [65]. With feasibility established—as there was much skepticism early on as to the capacities of persons in recovery to do so—a number of approaches to what has come to be called peer support have since been developed by such peer leaders as Mead [66], Copeland [67], and Fricks [68]. Instead of providing the same services as conventional staff, such as case management or rehabilitative interventions, these approaches typically focus on instilling hope that recovery is possible, sharing the peer staff member’s accumulated life experiences with navigating the health and social service systems, and role-modeling coping strategies and self-care skills [69, 70]. There are a number of different ways to provide this form of peer support, ranging from entirely peer-run agencies or programs that are outside of the formal mental health system on one end of the spectrum to hiring peer staff to complement the services provided by inpatient units, assertive community treatment teams, and other conventional services. Most recently, the emphasis of healthcare reform on patient navigation has led to rapid growth of peer health navigation programs aimed at addressing the 20- to 25-year disparity in lifespan experienced by persons with serious mental illnesses. Systematic reviews and meta-analyses provide evidence that peer-delivered services are equal or superior to usual care conditions in traditional clinical domains (for example, hospitalization rates, symptom severity) but consistently superior in recovery-oriented domains (for example, increasing hope, empowerment, and quality of life) [69, 71–73]. A recent systematic review of peer-based interventions targeting physical health in persons with serious

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mental illnesses concluded that the most promising interventions were selfcare and peer navigator interventions [74].

4.3.5 Wellness and Self-Management With respect to the considerable physical morbidity and premature mortality of adults with serious mental illnesses [75], additional efforts to redress this disparity include development of interventions that promote wellness and self-management of chronic medical illnesses [76] and organizational changes like collaborative chronic care models and patient-centered medical homes [77]. Recent meta-analyses confirm that chronic disease selfmanagement interventions, integrated care models, and patient-centered medical homes can improve mental and physical outcomes for individuals with mental illnesses across different care settings while reducing overall healthcare costs [78–83].

4.3.6 Person-Centered and Self-Directed Care Finally, while we pointed out that personal recovery is first and foremost an issue of rights rather than evidence, there is an accumulating body of research as well that finds that transforming mental health care to be recoveryoriented (that is, person-centered) and to emphasize the role of the individual in directing his or her own care and taking on responsibility for self-care leads to improved adherence and outcomes and decreased costs. Three examples of such transformative practices are shared decision-making [84], self-directed care [85], and the use of psychiatric advance directives [86]. Shared decision-making involves practitioners developing collaborative relationships with the people they serve (and their loved ones) so that healthcare decisions are made, ideally, through discussion and consensus development between the involved parties. Self-directed care goes beyond shared decision-making to enable individuals to decide on which services and interventions they would like to purchase from their allotted amount of mental health resources (based on assessment of need). Psychiatric advance directives enable people to develop plans during periods of relative stability or wellness for how they would prefer others to help them should they become ill again, including preferences for medications and safety plans. These kinds of changes to conventional services via personcentered and self-directed care approaches and the incorporation of shared

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decision-making and psychiatric advance directives—all of which allow individuals to exercise greater choice and control over their own care—show benefits over usual care [87, 88]. These enhancements are observed in adherence and self-management as well as in specific physical and mental health outcomes, yielding improved cost-effectiveness, service satisfaction, and quality of life as well as reduced inpatient and emergency room use [89–91] and possibly involuntary care [92]. Moreover, the benefits of approaches such as these appear to be even greater when interventions are more comprehensive, intensive, and integrated into routine care [87]. A recently published meta-analysis related to these issues determined that “recovery-focused interventions, especially those that involve collaborations between mental health professionals and peer providers, may serve to foster increased recovery, hope, and empowerment among individuals with serious mental illnesses” [93]. It is important to note, however, that the studies included in this meta-analysis explicitly focused on implementation of individual-level recovery-oriented principles (for example, self-directed goals, and personal strengths) as opposed to more comprehensive approaches that are integrated into routine care. In this regard, there is little evidence that the more ambitious vision of a fully “recovery-oriented system of care” has yet to be established, much less evaluated. This remains as one of the challenges for the future, to which we now turn.

4.4 Conclusions In this final section, we conclude with some thoughts about future directions for practice, research, and policy with respect to recovery.

4.4.1 Practice Directions Where does this leave us? For the foreseeable future, the mental health field will continue to use two different meanings of the term recovery, a practice which will likely perpetuate the confusions and misunderstandings of the past. For clinical recovery to play a more pervasive and hopeful role in the future, both community/public and professional education will need to present a more accurate picture of the diversity and heterogeneity in course and outcome of even the most severe of the serious mental illnesses (that is, schizophrenia-spectrum disorders). This will include making the data on

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long-term outcome accessible and understandable to all parties, defusing the pessimism that has continued to plague the field. This is important not only because this pessimism can be contagious to patients and their families, but also because it is conveyed to and through the mental health professionals serving them [94–97]. It also has allowed for the stigma and discrimination directed against persons with serious mental illnesses to persist [2], posing serious barriers to access and adherence [30], undermining efforts to achieve true parity in funding between behavioral health and physical health, and making it all the more difficult for people to recover fully. On the other hand, for personal recovery to be effective in leading to the substantial kind of system transformation its advocates have envisioned, it will need to remain connected in significant ways with people who experience serious mental health conditions and with the care of those persons affected by them. That is, it will not benefit acceptance of a recovery paradigm in mental health care for personal recovery to be defined in abstract and universal terms that could apply to anyone and that do not provide concrete guidance for changing practice. Personal recovery will be extremely limited in its utility and impact as a concept if it comes to be understood as a vaguely humanistic value on a par with motherhood and apple pie. In order for this tendency to be overcome, we argue that personal recovery be viewed—as we defined it earlier in this chapter—as a complement to clinical recovery rather than as contradictory or irrelevant to it. As we do with most other health conditions, we persist in trying everything we can do to promote a full and sustained recovery from a serious mental illness. But when that full recovery remains a distant hope, we now know that we do not have to abandon the person to a shadow or second-class existence on the margins of our community, to live a life of chronic disability, social isolation, and quiet desperation. Rather, as we do with some other disabilities, when full recovery is not yet possible, we take up a new set of tools to empower and support the person in leading as full and personally meaningful a life as possible. In Anthony’s terms, we no longer believe that someone is “too” mentally ill to learn how to live well with a mental illness.

4.4.2 Research Directions A final consideration is how this new toolbox that the field is developing can lead to transformations not only in policy and practice, but to research priorities and approaches as well. With respect to all three of these domains,

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the disability rights motto of “Nothing about us, without us!” provides a useful guiding framework. Now that we know that many people do recover from, and in, serious mental illnesses, it follows that they should be involved in all aspects of the design, delivery, and evaluation of mental health care. This is the mental health equivalent of an analogous movement of increasing stakeholder involvement in medical research more broadly, as exemplified in the United States by the Patient-Centered Outcomes Research Institute (PCORI) that was funded as part of the Affordable Care Act. PCORI and its sister research institutes across the English-speaking world require the early, continuous, and robust involvement of patient/family and other stakeholders in research. This approach is not limited to the development of patient-reported outcome measures or shared decision-making tools— examples in which stakeholder input is obviously necessary—but throughout medical and psychiatric research more broadly. As Goodare and Lockwood pointed out almost twenty years ago, for instance, the British Medical Journal has long advocated that “patients should help to decide which research is conducted, help to plan the research and interpret the data, and hear the results before anybody else” [98]. This inclusive, participatory approach to research began with breast cancer and first came to maturity during the AIDS/HIV crisis. It has since taken hold in psychiatry, as well, with a growing community of “service users” involved in various ways and to various degrees across mental health research, from volunteer advisors or consultants, to “coresearchers,” to principal investigators leading their own studies and research teams (for example [99–101]). Areas in which a service user perspective may be especially needed and be potentially quite productive are the use of involuntary interventions, psychopharmacology, and treatment outcome studies, and research on the nature of psychiatric symptoms and their conceptualization (and possible amelioration) as part of discrete psychiatric conditions. As just one example, the rapid growth of the Hearing Voices Movement over the last decade has begun to call into question the pathological nature of auditory hallucinations and their inclusion as diagnostic criteria for psychotic disorders. If, as this movement argues [102, 103], there are many people who hear voices but who do not experience or demonstrate any of the other signs or symptoms of a serious mental illness, on what basis do we justify, or perpetuate, the practice of viewing such voices as pathological, and what implications does changing this view have for policy?

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4.4.3 Policy Directions Changes in policy will not only come about through new approaches to research and evaluation, though, because the “nothing about us, without us” principle applies in these domains as well (for example [104]). Policy change will most likely occur through the involvement of persons who have recovered and/or are in (personal) recovery. With this involvement, policy and practice will become transformed in the ways envisaged by the Surgeon General’s and New Freedom Commission reports. Both the organizational culture and routine practice of mental health programs and settings are already being transformed through the infusion of paid peer staff, as well as through the adoption of recovery-oriented policies. These changes include challenging and combatting stigma and discrimination within and beyond the mental health system, moving the goalposts of care beyond symptom reduction to the restoration of a full life in the community, making practice more person-centered and strength-based, addressing health disparities through cultural competence, and empowering, educating, and coaching people to assume their own self-care. Some of these changes are coming about through implementation of the rehabilitative strategies described above for which an evidence base is still accumulating (for example, supported housing and employment). But additional changes will need to be made to assure the broad dissemination of these rehabilitative tools and strategies and their integration into comprehensive and coordinated systems of care. We illustrate this point through the example of supported employment, which, as we have said, already has a robust evidence base. Despite surveys that suggest that at least 65% of persons with serious mental illnesses would like to work, and despite the value accorded to employment within American culture—the average penetration rate for supported employment programs offered by state systems of care is 2% [105]. That means that only two out of every 100 persons with a serious mental illness within a given state will be offered access to a supported employment program. Were the penetration rate to increase substantially as a result of parity pressures, supported employment providers would then be faced with the challenge of generating an adequate flow of referrals, as clinicians and case managers historically have not seen competitive employment as an expected outcome or a common feature of recovery [106]. Similarly, the disability entitlements

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system would need to be modified to serve as an incentive—rather than disincentive—for people to return to work, and the education, and expectations, of family members would need to change accordingly as well. (See Chapters 22 and 23 for further assessments of disability and employment policies.) In this way, we remain a significant distance from having achieved the vision of a truly “recovery-oriented system of care.” The last two decades have witnessed some substantial improvements in terms of the numbers of persons with serious mental illnesses living outside of hospital settings, yet further changes need to be made to afford these persons the full and selfdirected lives envisioned by the President’s New Freedom Commission in 2003. This work is presumably now being taken up by the recently installed federal Interdepartmental Serious Mental Illness Coordinating Committee [105]. It is our hope that the early successes of the Recovery Movement, in combination with the more recent challenges issued by the citizenship paradigm discussed in Chapter 10, will heavily inform these efforts.

References 1. Davidson, L. (2016). The recovery movement: Implications for mental health care and enabling people to participate fully in life. Health Affairs, 35(6), 1091–1097. 2. U.S. Department of Health and Human Services. (2003). Achieving the promise: Transforming mental health care in America. Rockville, MD: U.S. Substance Abuse and Mental Health Services Administration. 3. Weiner, D. B. (1992). Pinel’s “Memoir on Madness” of December 11, 1794: A fundamental text of modern psychiatry. American Journal of Psychiatry, 149, 725–732. 4. Kraepelin, E. (1904). Lectures on clinical psychiatry (T. Johnstone, Ed.). New York, NY: William Wood & Company. 5. Kraepelin, E. (1907). Clinical psychiatry: A textbook for students and physicians (A. R. Diefendorf, Trans.). New York, NY: Macmillan. 6. Harding, C. M., Brooks, G. W., Ashikaga, T., Strauss, J. S., & Breier, A. (1987). The Vermont longitudinal study of persons with severe mental illness, II: Long-term outcome of subjects who retrospectively met DSM-III criteria for schizophrenia. American Journal of Psychiatry, 144(6), 727–735. 7. Harding, C. M., Zubin, J., & Strauss, J. S. (1987). Chronicity in schizophrenia: Fact, partial fact, or artifact? Hospital and Community Psychiatry, 38(5), 477–486.

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8. Ciompi, L. (1980). The natural history of schizophrenia in the long term. British Journal of Psychiatry, 136(5), 413–420. 9. Lin, K. M., & Kleinman, A. M. (1988). Psychopathology and clinical course of schizophrenia: A cross-cultural perspective. Schizophrenia Bulletin, 14(4), 555–567. 10. Bleuler, M. (1978). The schizophrenic disorders: Long-term patient and family studies (S. M. Clemens, Trans.). New Haven, CT: Yale University Press. 11. Carpenter, W. T., & Kirkpatrick, B. (1988). The heterogeneity of the longterm course of schizophrenia. Schizophrenia Bulletin, 14, 645–652. 12. Davidson, L., & McGlashan, T. H. (1997). The varied outcomes of schizophrenia. Canadian Journal of Psychiatry, 42(1), 34–43. 13. Slade, M. (2009). Personal recovery and mental illness: A guide for mental health professionals. Cambridge: Cambridge University Press. 14. Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11(4), 11–19. 15. Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11–23. 16. Chamberlin, J. (1978). On our own: Patient controlled alternatives to the mental health system. New York: McGraw Hill. 17. Cohen, P., & Cohen, J. (1984). The clinician’s illusion. Archives of General Psychiatry, 41, 1178–1182. 18. Strauss, J. S., & Carpenter, W. T., Jr. (1972). Prediction of outcome in schizophrenia. I: Characteristics of outcome. Archives of General Psychiatry, 27, 739–746. 19. Strauss, J. S., & Carpenter, W. T., Jr. (1974). The prediction of outcome in schizophrenia. II: Relationships between predictor and outcome variables: A report from the WHO international pilot study of schizophrenia. Archives of General Psychiatry, 31(1), 37–42. 20. Strauss, J. S., & Carpenter, W. T., Jr. (1977). Prediction of outcome in schizophrenia. III: Five-year outcome and its predictors. Archives of General Psychiatry, 34(2), 159–163. 21. Strauss, J. S., Hafez, H., Lieberman, P., & Harding, C. M. (1985). The course of psychiatric disorder, III: Longitudinal principles. American Journal of Psychiatry, 142(3), 289–296. 22. Onken, S. J., Craig, C. M., Ridgway, P., Ralph, R. O., & Cook, J. A. (2007). An analysis of the definitions and elements of recovery: A review of the literature. Psychiatric Rehabilitation Journal, 31(1), 9–22. 23. Slade, M., Leamy, M., Bacon, F., Janosik, J., Le Boutillier, C., & Bird, V. (2012). International differences in understanding recovery: Systematic review. Epidemiology & Psychiatric Sciences, 1–12.

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24. Drake, R. E., Becker, D. R., Clark, R. E., & Mueser, K. T. (1999). Research on the individual placement and support model of supported employment. Psychiatric Quarterly, 70(4), 289–301. 25. Ridgway, P., & Zipple, A. M. (1990). The paradigm shift in residential services: From the linear continuum to supported housing approaches. Psychosocial Rehabilitation Journal, 13(4), 11–31. 26. Unger, K. V., Anthony, W. A., Sciarappa, K., & Rogers, E. S. (1991). A supported education program for young adults with long-term mental illness. Hospital and Community Psychiatry, 42(8), 838–842. 27. Davidson, L., Haglund, K. E., Stayner, D. A., Rakfeldt, J., Chinman, M. J., & Tebes, J. K. (2001). “It was just realizing … that life isn’t one big horror”: A qualitative study of supported socialization. Psychiatric Rehabilitation Journal, 24, 275–292. 28. David, D., Styron, T., & Davidson, L. (2011). Supported parenting as a way of meeting the parenting needs and concerns of mothers with severe mental illness. American Journal of Psychiatric Rehabilitation, 14(2), 137–153. 29. Russinova, Z., & Blanch, A. (2007). Supported spirituality: A new frontier in the recovery-oriented mental health system. Psychiatric Rehabilitation Journal, 30(4), 247–249. 30. U.S. Department of Health and Human Services. (1999). Mental health: A report of the surgeon general. Washington, DC: Author. 31. Substance Abuse and Mental Health Services Administration. (2011). Consensus definition of recovery in behavioral health. Retrieved from https:// 32. Geller, J. L. (2012). Patient-centered, recovery-oriented psychiatric care and treatment are not always voluntary. Psychiatric Services, 63, 493–495. 33. Dickerson, F. B. (2006). Disquieting aspects of the recovery paradigm. Psychiatric Services, 57, 647. 34. Davidson, L., O’Connell, M. J., Tondora, J., Styron, T., & Kangas, K. (2006). The top ten concerns about recovery encountered in mental health system transformation. Psychiatric Services, 57(5), 640–645. 35. Slade, M., Amering, M., Farkas, M., Hamilton, B., O’Hagan, M., Panther, G., … Whitley, R. (2014). Uses and abuses of recovery: Implementing recovery oriented practices in mental health systems. World Psychiatry, 13(1), 12–20. 36. Braslow, J. T. (2013). The manufacture of recovery. Annual Review of Clinical Psychology, 9, 781–809. 37. Harper, D., & Speed, E. (2014). Uncovering recovery: The resistible rise of recovery and resilience. In E. Speed, J. Moncrieff, & M. Rapley (Eds.), De-medicalizing misery, II: Society, politics and the mental health industry (pp. 40–57). London: Palgrave Macmillan. 38. Morrow, M. (2013). Recovery: Progressive paradigm or neoliberal smokescreen. In G. Reaume, B. A. LeFrançois, & R. J. Menzies (Eds.), Mad matters:

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A critical reader in Canadian mad studies (pp. 323–333). Toronto: Canadian Scholars Press. 39. Davidson, L. (2006). What happened to civil rights? Psychiatric Rehabilitation Journal, 30(1), 11–14. 40. Deegan, P. E. (1992). The Independent Living Movement and people with psychiatric disabilities: Taking back control over our own lives. Psychosocial Rehabilitation Journal, 15(3), 3–19. 41. Onocko Campos, R. T., Costa, M., Pereira, M. B., Ricci, E. C., da Silva Tavares Enes, G., Janeth, L., … Davidson, L. (2017). Recovery, citizenship, and psychosocial rehabilitation: A dialog between Brazilian and American mental health care approaches. American Journal of Psychiatric Rehabilitation, 20(3), 311–326. 42. Davidson, L., Chan, B., & Rowe, M. (2013, April). Core elements of mental health transformation in an Asian context. Asia Health Care Journal, 3, 11–15. 43. Compton, M. T., & Shim, R. S. (Eds.). (2015). The social determinants of mental health. Washington, DC: American Psychiatric Association. 44. Rowe, M., & Davidson, L. (2016). Recovering citizenship. Israel Journal of Psychiatry and Related Sciences, 53(1), 14–21. 45. Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabilities. New York: Guilford Press. 46. Tsemberis, S., & Eisenberg, R. F. (2000). Pathways to housing: Supported housing for street-dwelling homeless individuals with psychiatric disabilities. Psychiatric Services, 51(4), 487–493. 47. Rog, D. J., Marshall, T., Dougherty, R. H., George, P., Daniels, A. S., Ghose, S. S., & Delphin-Rittmon, M. E. (2014). Permanent supportive housing: Assessing the evidence. Psychiatric Services, 65(3), 287–294. 48. Kinoshita, Y., Furukawa, T. A., Kinoshita, K., Honyashiki, M., Omori, I. M., Marshall, M., … Kingdon, D. (2013). Supported employment for adults with severe mental illness. Cochrane Database of Systematic Reviews, 13(9), CD008297. 49. Marshall, T., Goldberg, R. W., Braude, L., Dougherty, R. H., Daniels, A. S., Ghose, S. S., … Delphin-Rittmon, M. E. (2014). Supported employment: Assessing the evidence. Psychiatric Services, 65(1), 16–23. 50. Modini, M., Tan, L., Brinchmann, B., Wang, M., Killackey, E., Glozier, N., … Harvey, S. B. (2016). Supported employment for people with severe mental illness: Systematic review and meta-analysis of the international evidence. The British Journal of Psychiatry, 209(1), 14–22. 51. Mueser, K. T., Drake, R. E., & Bond, G. R. (2016). Recent advances in supported employment for people with serious mental illness. Current Opinion in Psychiatry, 29(3), 196–201. 52. Charzyńska, K., Kucharska, K., & Mortimer, A. (2015). Does employment promote the process of recovery from schizophrenia? A review of the existing evidence. International Journal of Occupational Medicine, 28, 407–418.

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53. Luciano, A., Bond, G. R., & Drake, R. E. (2014). Does employment alter the course and outcome of schizophrenia and other severe mental illnesses? A systematic review of longitudinal research. Schizophrenia Research, 159, 312–321. 54. van Rijn, R. M., Carlier, B. E., Schuring, M., & Burdorf, A. (2016). Work as treatment? The effectiveness of re-employment programmes for unemployed persons with severe mental health problems on health and quality of life: A systematic review and meta-analysis. Occupational and Environmental Medicine, 73, 275–279. 55. Leff, J., & Warner, R. (2006). Social inclusion of people with mental illness. Cambridge: Cambridge University Press. 56. Dixon, L. B., Goldman, H. H., Bennett, M. E., Wang, Y., McNamara, K. A., Mendon, S. J., … Essock, S. M. (2014). Implementing coordinated specialty care for early psychosis: The RAISE Connection Program. Psychiatric Services, 66, 691–698. 57. Kane, J. M., Robinson, D. G., Schooler, N. R., Mueser, K. T., Penn, D. L., Rosenheck, R. A., … Marcy, P. (2015). Comprehensive versus usual community care for first-episode psychosis: 2-year outcomes from the NIMH RAISE early treatment program. American Journal of Psychiatry, 173(4), 362–372. 58. Srihari, V. H., Tek, C., Kucukgoncu, S., Phutane, V. H., Breitborde, N. J. K., Pollard, J., … Woods, S. W. (2015). First-episode services for psychotic disorders in the U.S. public sector: A pragmatic randomized controlled trial. Psychiatric Services, 66, 705–712. 59. Davidson, L., & Stern, E. (2013). Psychiatric/psychosocial rehabilitation (PSR) in relation to social and leisure environments: Friends and recreation. Current Psychiatry Reviews, 9, 207–213. 60. McCorkle, B. H., Rogers, E. S., Dunn, E. C., Lyass, A., & Wan, Y. M. (2008). Increasing social support for individuals with serious mental illness: Evaluating the compeer model of intentional friendship. Community Mental Health Journal, 44(5), 359–366. 61. Nicholson, J., & Deveney, W. (2009). Why not support(ed) parenting? Psychiatric Rehabilitation Journal, 33(2), 79–82. 62. Schrank, B., Moran, K., Borghi, C., & Priebe, S. (2015). How to support patients with severe mental illness in their parenting role with children aged over 1 year? A systematic review of interventions. Social Psychiatry and Psychiatric Epidemiology, 50(12), 1765–1783. 63. Davidson, L., Rakfeldt, J., & Strauss, J. S. (2010). The roots of the recovery movement in psychiatry: Lessons learned. London: Wiley-Blackwell. 64. Davidson, L., Chinman, M., Kloos, B., Weingarten, R., Stayner, D. A., & Tebes, J. K. (1999). Peer support among individuals with severe mental illness: A review of the evidence. Clinical Psychology: Science and Practice, 6, 165–187. 65. Davidson, L., Chinman, M., Sells, D., & Rowe, M. (2006). Peer support among adults with serious mental illness: A report from the field. Schizophrenia Bulletin, 32, 443–450.

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66. Copeland, M., & Mead, S. (2003). WRAP and peer support: A guide to individual, group and program development. Dummerston, VT: Peach Press. 67. Copeland, M. (2002). WRAP: Wellness recovery action plan (2nd ed.). Dummerston, VT: Peach Press. 68. Druss, B. G., Zhao, L., Esenwein, S. A., Bona, J. R., Fricks, L., JenkinsTucker, S., … von Lorig, K. (2010). The Health and Recovery Peer (HARP) Program: A peer-led intervention to improve medical self-management for persons with serious mental illness. Schizophrenia Research, 118(1), 264–270. 69. Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E. (2014). Peer support services for individuals with serious mental illnesses: Assessing the evidence. Psychiatric Services, 65(4), 429–441. 70. Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: A review of evidence and experience. World Psychiatry, 11(2), 123–128. 71. Pitt, V., Lowe, D., Hill, S., Prictor, M., Hetrick, S. E., Ryan, R., & Berends, L. (2013). Consumer-providers of care for adult clients of statutory mental health services. Cochrane Database Systematic Reviews, 3(9), CD004807. 72. Lloyd-Evans, B., Mayo-Wilson, E., Harrison, B., Istead, H., Brown, E., Pilling, S., … Kendall, T. (2014). A systematic review and meta-analysis of randomised controlled trials of peer support for people with severe mental illness. BMC Psychiatry, 14(1), 39. 73. Fuhr, D. C., Salisbury, T. T., De Silva, M. J., Atif, N., van Ginneken, N., Rahman, A., & Patel, V. (2014). Effectiveness of peer-delivered interventions for severe mental illness and depression on clinical and psychosocial outcomes: A systematic review and meta-analysis. Social Psychiatry and Psychiatric Epidemiology, 49(11), 1691–1702. 74. Cabassa, L. J., Camacho, D., Vélez-Grau, C. M., & Stefanic, A. (2017). Peerbased health interventions for people with serious mental illness: A systematic literature review. Journal of Psychiatric Research, 84, 80–89. 75. Walker, E. R., McGee, R. E., & Druss, B. G. (2015). Mortality in mental disorders and global disease burden implications: A systematic review and meta-analysis. JAMA Psychiatry, 72(4), 334–341. 76. McGinty, E. E., Baller, J., Azrin, S. T., Juliano-Bult, D., & Daumit, G. L. (2016). Interventions to address medical conditions and health-risk behaviors among persons with serious mental illness: A comprehensive review. Schizophrenia Bulletin, 42(1), 96–124. 77. Suetani, S., Whiteford, H. A., & McGrath, J. J. (2015). An urgent call to address the deadly consequences of serious mental disorders. JAMA Psychiatry, 72(12), 1166–1167. 78. Woltmann, E., Grogan-Kaylor, A., Perron, B., Georges, H., Kilbourne, A. M., & Bauer, M. S. (2012). Comparative effectiveness of collaborative chronic care models for mental health conditions across primary, specialty, and

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behavioral health care settings: Systematic review and meta-analysis. American Journal of Psychiatry, 169(8), 790–804. 79. Miller, C. J., Grogan-Kaylor, A., Perron, B. E., Kilbourne, A. M., Woltmann, E., & Bauer, M. S. (2013). Collaborative chronic care models for mental health conditions: Cumulative meta-analysis and meta-regression to guide future research and implementation. Medical Care, 51(10), 922–930. 80. Siantz, E., & Aranda, M. P. (2014). Chronic disease self-management interventions for adults with serious mental illness: A systematic review of the literature. General Hospital Psychiatry, 36(3), 233–244. 81. Nielsen, M., Gibson, A., Buelt, L., Grundy, P., & Grumbach, K. (2014). The patient-centered medical home’s impact on cost and quality: Annual review of evidence 2012–2013. Patient-Centered Primary Care Collaborative and Milbank Memorial Fund. Retrieved from uploads/2015/01/PCPCC_2014_Evidence_Report.pdf. 82. Nielsen, M., Gibson, A., Buelt, L., Grundy, P., & Grumbach, K. (2015). The patient-centered medical home’s impact on cost and quality: Annual review of evidence 2013–2014. Patient-Centered Primary Care Collaborative and Milbank Memorial Fund. Retrieved from uploads/2015/01/PCPCC_2015_Evidence_Report.pdf. 83. Nielsen, M., Gibson, A., Buelt, L., Grundy, P., & Grumbach, K. (2017). The patient-centered medical home’s impact on cost and quality: Annual review of evidence 2015–2016. Patient-Centered Primary Care Collaborative and Milbank Memorial Fund. Retrieved from uploads/2017/08/pcmh_evidence_report_FINAL-1.jpg. 84. Deegan, P. E., & Drake, R. E. (2006). Shared decision making and medication management in the recovery process. Psychiatric Services, 57(11), 1636–1639. 85. Welder, L. E., Maula, E. C., Diamond, B. W., Baron, R. C., & Salzer, M. S. (2015). A guide to creating self-directed care programming. Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities. 86. Swanson, J. W., Tepper, M. C., Backlar, P., & Swartz, M. S. (2000). Psychiatric advance directives: An alternative to coercive treatment? Psychiatry, 63(2), 160–172. 87. Coulter, A., Entwistle, V. A., Eccles, A., Ryan, S., Shepperd, S., & Perera, R. (2013). Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database Systematic Reviews, 3(3), CD010523. 88. Davidson, L., Roe, D., Stern, E., Zisman-Ilani, Y., O’Connell, M., & Corrigan, P. (2012). If I choose it, am I more likely to use it? The role of choice in medication and service use. International Journal of Person Centered Medicine, 2(3), 577–592. 89. Slade, E. (2012). Feasibility of expanding self-directed services for people with serious mental illnesses. Washington, DC: Office of Assistant

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Secretary for Planning and Evaluation, US Department of Health and Human Services. Retrieved from feasibility-expanding-self-directed-services-people-serious-mental-illnes. 90. Spalding-Givens, J., & Lacasse, J. (2015). Self-directed care: Participants’ service utilization and outcomes. Psychiatric Rehabilitation Journal, 38, 74–80. 91. Webber, M., Treacy, S., Carr, S., Clark, M., & Parker, G. (2014). The effectiveness of personal budgets for people with mental health problems: A systematic review. Journal of Mental Health, 23, 146–155. 92. Stovell, D., Morrison, A. P., Panayiotou, M., & Hutton, P. (2016). Shared treatment decision-making and empowerment-related outcomes in psychosis: Systematic review and meta-analysis. British Journal of Psychiatry, 209(1), 23–28. 93. Thomas, E. C., Despeaux, K. E., Drapalski, A. L., & Bennett, M. (2017, December 1). Person-oriented recovery of individuals with serious mental illnesses: A review and meta-analysis of longitudinal findings. Psychiatric Services. 94. Charles, J. L. K. (2013). Mental health provider-based stigma: Understanding the experience of clients and families. Social Work and Mental Health, 11(4), 360–375. 95. Verhaeghe, M., & Bracke, P. (2012). Associative stigma among mental health professionals: Implications for professional and service user well-being. Journal of Health and Social Behavior, 53(1), 17–32. 96. Nordt, C., Rossler, W., & Lauber, C. (2006). Attitudes of mental health professionals toward people with schizophrenia and major depression. Schizophrenia Bulletin, 32(4), 709–714. 97. Schulze, B. (2007). Stigma and mental health professionals: A review of the evidence on an intricate relationship. International Review of Psychiatry, 19(2), 137–155. 98. Goodare, H., & Lockwood, S. (1999). Involving patients in clinical research: Improves the quality of research. British Medical Journal, 319(7212), 724–725. 99. Wallcraft, J., Amering, M., & Schrank, B. (Eds.). (2009). Handbook of service user involvement in mental health research. London: Wiley. 100. Borg, M., & Kristiansen, K. (Eds.). (2009). Collaborative research: Working together in developing knowledge about mental health. Oslo: Universitetsforlaget. 101. Davidson, L., Bellamy, C., Flanagan, E., Guy, K., & O’Connell, M. (2017). A participatory approach to person-centred research: Maximising opportunities for recovery. In B. McCormack, T. Eide, K. Skovdal, H. Eide, H. Kapstadand, & S. van Dulmen (Eds.), Person-centered healthcare research—‘The person in question’: The person-centered research handbook (pp. 69–83). London: Wiley. 102. Longden, E., Corstens, D., Escher, S., & Romme, M. (2012). Voice hearing in a biographical context: A model for formulating the relationship between voices and life history. Psychosis, 4(3), 224–234.

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103. Corstens, D., Longden, E., McCarthy-Jones, S., Waddingham, R., & Thomas, N. (2014). Emerging perspectives from the hearing voices movement: Implications for research and practice. Schizophrenia Bulletin, 40(Suppl. 4), S285–S294. 104. Davidson, L., Ridgway, P., O’Connell, M. J., & Kirk, T. A. (2014). Transforming mental health care through the participation of the recovery community. In G. Nelson, B. Kloos, & J. Ornelas (Eds.), Community psychology and community mental health: Towards transformative change (pp. 90–107). New York: Oxford University Press. 105. Interdepartmental Serious Mental Illness Coordinating Committee. (2017). The way forward: Federal action for a system that works for all people living with SMI and SED and their families and caregivers. Rockville, MD: US Substance Abuse and Mental Health Services Administration. Retrieved from https:// pdf. 106. Costa, M., Baker, M., Davidson, L., Giard, J., Guillorn, L., González, … O’Connell, M. (2017). Provider perspectives on employment for persons with serious mental illness. International Journal of Social Psychiatry, 63(7), 632–640.

5 Balancing Access to Medications and Psychosocial Treatments Patricia A. Areán and Anna Ratzliff

5.1 Framing the Issue One in five adults in the United States suffers from a mental illness each year [1]. Many of these illnesses are treatable or manageable with medication and psychosocial treatments. Both types of approaches have been thoroughly evaluated and are thus evidence-based. Indeed, several guidelines and systematic reviews for illnesses such as depression, anxiety, psychosis, and substance abuse find that both medication and psychosocial treatment are effective [2]. For instance, psychotherapy is regarded by countries with regulated health care to be a first-line treatment for depression and anxiety disorders, and necessary adjuncts to medication management of illnesses such as psychosis and bipolar disorder. For illnesses where no medication is effective (for example, personality disorders), psychosocial treatment can be a powerful alternative to improve quality of life in people who suffer from those disorders [3–7]. These policies are supported by numerous randomized controlled trials (RCTs) and meta-analyses [3, 4, 8, 9] and are true for P. A. Areán (*)  Department of Psychiatry and Behavioral Sciences, UW ALACRITY Center, University of Washington, Seattle, WA, USA A. Ratzliff  Department of Psychiatry and Behavioral Sciences, AIMS Center, University of Washington, Seattle, WA, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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children [10–14], older adults [15–17], low-income [18], and ethnic/racial minority populations [19–27]. Not only are psychosocial treatments effective, they are highly preferred modes of treatment. Several studies from around the globe consistently find that psychosocial treatments are preferred and seen as important aspects to treatment for people living in poverty, racial, and ethnic minorities, across all psychiatric disorders [28–36]. A disproportionate number of people seeking mental health care in the United States, however, receive medication treatment only [29, 32, 37–46] and of those who do receive psychosocial treatment, the modal number of sessions used is two, far fewer than is recommended by treatment guidelines [47, 48]. Psychosocial treatment use has declined in the United States from 15% of those with depression receiving psychotherapy in 1997 to 10% in 2007 and to 6% in 2010 [47–49]. There is also a marked underuse of psychosocial treatments with low-income and minority patients [50], despite a preference for psychosocial treatments in these communities [39]. This is not to say that treatment involving medications is without its own challenges. There continues to be controversy related to the use of medication treatment. For example, although some argue that antidepressants are overprescribed [51], others will argue that depression is still underdiagnosed and undertreated with medications. Another example of suboptimal medication use is the increased prescription of antipsychotics in youth and older populations, where antipsychotic use is more controversial because of the limited data on the risk-to-benefit considerations [52]. These concerns about medication prescribing patterns are being addressed with a variety of policy and educational strategies, such as state-level implementation of second opinion programs for complex patients, which has improved safety of prescribing practices [53]. The U.S. Food and Drug Administration (FDA) also sets warning labeling to highlight risks and shape prescribing practice, such as the introduction of the “black box” warnings, although it is not clear how impactful these labels are in shifting prescribing practices [54]. There are increasingly national efforts such as Choosing Wisely, an initiative of the American Board of Internal Medicine Foundation, in which national organizations, such as the American Psychiatric Association (APA), develop national standards to promote best practices, including prescribing psychotropic medications. Lastly, systematic prescribing algorithms guided by measurement-based treatment have been found to improve prescribing patterns and patient outcomes, and serve as an emerging strategy to improve medication management [55].

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While there is more work to be done to improve prescription practices for mental health problems, to date there are no known efforts in the United States to manage high-quality delivery of psychosocial treatments, and thus they remain underprescribed and underused. Efforts in the United Kingdom, however, have begun to demonstrate that the problems faced by other countries, the United States in particular, can be overcome through changes in policy. This chapter will focus primarily on the underuse of psychosocial interventions, rather than the overreliance on medications.

5.2 Questions The two main questions to be explored in this chapter are: How do we explain the imbalance in treatments and how might we correct the balance in favor of psychosocial treatments? The first question on explaining the imbalance of treatments is framed in this chapter as a series of challenges, enumerated below. The second question on correcting the imbalance covers examples of how these challenges have been addressed in research and implementation projects. Evidence for the imbalance and potential solutions is addressed in the next section.

5.2.1 How Do We Explain the Imbalance in Medication and Psychosocial Treatments? Maldistribution of services is due to several factors that impede the quality and availability of psychosocial treatments. Although high-quality medication management is not without its challenges (e.g., proper monitoring by clinicians, efficient medication selection and adjustment, limited access to information on best practices), psychosocial treatments are a particularly difficult type of intervention to deliver. The primary challenges faced by policy makers, clinicians, and patients are (1) no clear consensus in the United States as to which treatments are evidence-based and should be supported, (2) poorly defined and enforced training of clinicians in Evidence-Based Treatments (EBTs), (3) inconsistent state-level certification/licensure policies and practices for clinicians delivering these forms of treatment, none of which is competency-based, (4) location of services and the distinct disincentive for providing care outside of the standard office-based practice framework, (5) complexity of monitoring the quality of care, and (6) poor

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incentive structures for providing high-quality care [56]. We discuss each of these challenges in the Evidence section below.

5.2.2 How Might We Correct the Balance in Favor of Psychosocial Treatments? The challenges enumerated above can be addressed in the following ways, and there is preliminary evidence to support these approaches. As was detailed in the Institute on Medicine report on standards for psychosocial interventions, access to psychosocial treatment is facilitated by (1) achieving consensus on treatment recommendations through a centralized process whereby policy makers and educators can find these recommendations in one place, (2) improving clinician training through the identification of training in agreed-upon competencies using state-of-the-art training methods, (3) using competency-based credentialing, (4) implementing mental health services in settings other than specialty mental health, using evidence-based integration models, (5) developing methods for measuring the quality of care, and (6) creating incentive structures that reward clinicians for using evidence-based practices and working with hard-to-treat populations [56].

5.3 Evidence The evidence base in support of the methods we recommend to right the balance between psychosocial and medical treatments for mental health problems are mixed in the degree to which evidence is available. For instance, there is substantial evidence from clinical trials in support of integrated care models, the impact of quality measures on outcomes, and some data in support of creating incentive structures for improving use of EBTs. Data on the utility of centralizing treatment recommendations, training, and credentialing methods are based on information from systems of care that have applied these strategies and compared patient improvement and access to care prior with implementation of these initiatives with access and outcomes after implementation. While all the recommendations we put forth here have an evidence base, there is still more research and development needed for creating high-quality measures for psychosocial treatments and scalable training and credentialing methods.

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5.3.1 Imbalance of Medication and Psychosocial Treatments The imbalance in the prescription and use between medication and psychosocial treatment is a function of the poor regulation of treatment recommendations, training, credentialing, and quality monitoring of psychosocial treatments—as well as the lack of incentives for clinicians to recommend and provide EBTs. As an example, there are several systematic reviews regarding best practices for the treatment of major depression, all of which significantly conflict with one another. This lack of consensus influences the variability in the education and credentialing of clinicians, resulting in a variably trained and prepared workforce. The lack of consensus also impacts how we measure the quality of care; this ambiguity results in considerable controversy over how clinicians should be incentivized for their practice. If we are not able to agree on what is evidence-based and which services should be available to patients, then it becomes difficult to develop training programs, service models, and quality measures. Below we discuss in more detail the challenges that influence this imbalance.

5.3.2 Conflicting Information Regarding Best Practices In the United States, there is no single place to obtain the latest information about which psychosocial treatments are evidence-based for different disorders [57] and populations. In countries such as the United Kingdom and Australia, independent entities are contracted by governmental agencies to conduct independent, regular, and timely systematic reviews. These reviews then are translated into user-friendly guidelines to clinicians, as well as into educational materials for potential patients. In the United States, the onus is on the professional guilds to provide this guidance, which often results in conflicting systematic reviews, recommendations, and guidelines [58]. As an example, the American Psychiatric Association in 2010 recommended that major depression be treated with a combination of medications and psychosocial treatments [59] (which rarely happens in practice), whereas the soon-to-be-released 2018 depression guidelines from the American Psychological Association (APA) [60] recommend a stepped-care approach to treatment where for milder forms of the illness, psychosocial treatments should be offered first, and for more severe versions of the illness, medications should be prescribed in addition to psychosocial treatments. The reason for the differing practice recommendations likely stems from differing

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systematic review practices. As an example, the American Psychiatric Association Guidelines were developed and written by a team of psychiatrists, whereas the American Psychological Association guidelines were written by a multidisciplinary team that included psychiatrists, psychologists, social workers, and family practice physicians. National Academy of Sciences (NAS) and Guidelines International Network (GIN) recommendations, adopted by most countries around the world as well as by the US Department of Veterans Affairs (VA), recommend that all guidelines be written by a multidisciplinary, independent panel of experts who use systematic reviews of the current literature that employ double coding of studies that are graded in terms of their scientific rigor. A multidisciplinary team reviews these data and then writes recommendations. Guidelines and recommendations then are made available for public comment. Although this rigorous practice is likely to minimize the release of discrepant guidelines, the process is expensive and time consuming. In fact, the Substance Abuse and Mental Health Services Administration’s National Registry of Evidence-based Programs and Practices (NREPP), the one place where policy makers could go to receive information about psychosocial intervention best practices, will be closing because it cannot maintain this standard of review.

5.3.3 Educational Policy and Practice Educational policies do not enforce training clinicians in evidence-based psychosocial interventions. Although the American Psychological Association, the American Psychiatric Association, and the Council on Social Work Education accredit and regularly review training programs, and both APAs require education in EBTs, these organizations do not offer any recommendations or guidelines to professional schools about how trainees should be exposed to evidence-based psychosocial interventions. This lack of formal guidelines has resulted in considerable variability among accredited programs in how trainees are educated. For example, some residency programs merely provide coursework in psychosocial treatments, whereas other programs require residents to treat at least one to two patients with evidence-based psychosocial treatments. Training programs for social workers and psychologists are least likely to make training in evidence-based psychosocial treatments mandatory, compared with psychiatry residency programs [61]. Even in programs that do require training in

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evidence-based interventions, very few rely on competency-based observational methods, which are the methods shown to be most effective in building clinical competencies [62, 63]. Competency-based training models rely heavily on problem-based learning methods, such as structured role-plays with feedback, as well as observation-based supervision of novice therapists. Currently, most training programs rely on passive supervision models (for example, case review). Poor preparation by training programs has led to the need for organizations to invest in workforce retraining efforts to ensure clinicians are providing EBTs, and these efforts are costly, time consuming [64], and variably effective in long-term sustainability [65, 66].

5.3.4 State-Level Licensing, Certification and Continuing Education Challenges State-level licensure and certification for mental health professionals vary widely from state to state. Although each license will have a unified core set of requirements, the determination of clinician competency is assumed by states to have been addressed already by the training programs that conferred the degree. As we stated previously, variability of training in the United States is considerable. As an example of the problem, to become a licensed psychologist in any state, you must have earned a Ph.D. in psychology from an accredited program; if the program is not accredited, the applicant usually must supply additional information regarding their training. In most states, the applicant must also produce a document signed by supervisors stating the applicant has completed at least one year of predoctoral training and postdoctoral training. Applicants then take a national, computerized exam called the Examination for Professional Practice in Psychology, a multiple-choice exam that covers eight clinical areas: the biological bases of behavior, cognitive-affective bases of behavior, social and multicultural bases of behavior, growth and life span development, assessment and diagnosis, treatment, research methods, and ethical/legal/professional issues. Some states require an additional multiple-choice exam to cover state-­ specific legal issues (for example, age of consent to treatment), and few require an in-person oral exam, which varies between review of a standardized case to presentation of a case the applicant has treated previously. Many states are loosening their criteria; for instance, in California, originally applicants had to demonstrate in an oral exam their ability to interpret psychological test data, conduct a case formulation, and show their ability to flexibly adjust

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their recommendations based on specific clinical challenges. California stopped this practice in the late 1990s and now requires only an additional exam regarding ethical and legal matters specific to the state. In contrast, most psychiatrists will have completed a four-year residency after medical training and obtained a medical license according to individual state requirements. The majority of psychiatrists also complete a board certification process administered by the American Board of Psychiatry and Neurology (ABPN). The board certification process requires physicians to (1) have a valid, unexpired, and unrestricted license to practice medicine in at least one state, commonwealth, territory, or possession of the United States or province of Canada and (2) complete an approved training program and an evaluation process assessing their ability to provide quality patient care in psychiatry, which is currently a standardized test [67]. In general, these licensing requirements do not require clinicians to have to demonstrate their ability to select and deliver evidence-based psychosocial treatments. After initial licensure and/or board certification, most clinicians are required to complete a specified amount of continuing education annually to maintain their board-certified status. Generally, continuing education programs are monitored by governing organizations; however, there are typically few restrictions about what can be included in an educational activity and no clear accountability to demonstrate that new learning has been integrated into practice. Although there has been increasing recognition that continuing education is important for maintaining knowledge and skills, as evidenced by ABPN switching to now require recertification every 10 years, this process does not ensure effective delivery of psychosocial treatments.

5.3.5 Location of Services Where and how care is delivered in the current mental health system significantly reduces opportunities to receive high-quality psychosocial treatments versus medication management. Interventions such as psychotherapy traditionally are offered in clinical offices, usually during regular working hours, with effective treatment typically delivered in weekly, hour-long appointments [68–74]. This care delivery structure creates a significant barrier to access for many people seeking psychosocial treatments because of challenges with transportation [75–77] and interference with typical work hours.

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In contrast, medication management requires far less regular contact (for example, monthly visits for 15 minutes to renew prescriptions). Although clinicians now may charge for telephone- or Skype-based therapy, the incentive to provide this mode of care is low, as reimbursement rates to clinicians are half of what reimbursements rates are for face-to-face treatment [68–74].

5.3.6 Complexity in Measuring Quality of Care Although no study has been done yet to directly assess the impact of poor-quality psychotherapy on the healthcare system and its contribution to societal costs, studies do demonstrate that practitioner competence in evidence-based psychotherapy directly impacts patient outcomes [78–81]. In turn, improved clinical outcomes in patients are related to lowered overall healthcare costs [82–85]. There is much discussion in the field about what constitutes “high-quality” delivery of psychosocial treatments, with continued disagreement regarding the relative importance of the active ingredients of these treatments compared with the nonspecific elements of care (warmth, empathy, genuineness). Most experts in these treatments acknowledge that nonspecific elements are important, but argue they are not sufficient in improving care [86–88]. Strict adherence to a treatment manual is regarded by many to be poor delivery of care [89, 90], and that clinician competencies in delivering EBTs should include the ability to be flexible with the treatment in response to patient characteristics. The immediate challenge here is in how to measure quality. Patientreported outcomes and patient satisfaction ratings are currently recommended as proxy quality measures [91]; these measures, however, are often difficult to collect from patients and do not directly assess whether the clinician is delivering care to acceptable levels of competence [57]. Training in EBTs is not sufficient to ensure that care is delivered appropriately; several studies demonstrate that post certification, clinicians quickly adapt, modify, or abandon the new treatment model [81, 92, 93]. For example, the National Implementing Evidence-Based Practices Project, which focused on psychosocial rehabilitation interventions, demonstrated that even with buy-in and support at the state level, less than 50% of agencies participating in the program continued to use the interventions, 37% discontinued the program completely, and 16% had to restart the implementation [94, 95].

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This result is echoed in the variable success the VA had implementing evidence-based psychotherapies in clinical practice. Although the VA made a large investment to (1) hire Ph.D.-level psychologists to provide psychotherapy and (2) provide high-level training in EBTs, the results of this implementation have been mixed. In one study of training in prolonged exposure (PE) and Cognitive Processing Therapy (CPT), 42% of those starting training certify as experts, and about half of the clinics engaged in training reported an increased use of either PE or CPT [96]. Additionally, of 38 sites that participated in training, 22 (58%) reported no increase in the use of these treatments, although most providers stated they made significant changes to the treatment manuals [97]. In both instances, successful implementation and sustainability depended on continued access to expert support and ongoing supervision, practices that are difficult to sustain financially.

5.3.7 Incentives to Provide EBTs Finally, for clinicians in most practice settings, there are no financial incentives to provide EBTs. The provision of psychotherapy by psychiatrists, for instance, has dropped dramatically over the years, in part because of the limited financial incentives for providing this type of care to patients; yet in settings where patients pay out of pocket for care, psychiatrists were more likely to offer psychotherapy [98]. Clearly, the value placed on psychosocial treatments by insurance companies is not aligned with the value clinicians and patients place on this type of care. There are some public mental health systems that pay a higher rate for providers of psychosocial rehabilitation EBTs, such as supported employment, that meet a standard of high-fidelity implementation (H. H. Goldman, personal communication, April 18, 2017, based on his experience in Maryland).

5.3.8 Methods for Improving Balanced Access to Psychosocial Treatments We now turn our discussion to potential solutions that mitigate the problems we identified above. In particular, we will discuss implementation models that have been developed to address problems in access to care, the shortage of trained clinicians in evidence-based psychosocial treatment, ensuring continued quality of care, and to incentivizing use of these practices.

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5.3.9 Achieving Consensus on Treatment Recommendations Before any policies to improve access to psychosocial treatments can be put into place, there must be consensus as to which treatments are effective for different disorders. In 1999, the National Institute for Health and Care Excellence was established in the United Kingdom to address problems in the availability and quality of care provided by the National Health Service. The process for conducting systematic reviews and subsequent guidelines has been updated in 2017 to follow both NAS and GIN [99] standards. The process consists of nomination by the public for a guideline focus. An independent panel of experts and consumers is formed to generate the focus of a systematic review of the literature, which is conducted by a second independent group of experts in methodology. Experts on the guideline panel review the results of the systematic review and write recommendations for practitioners. Then the National Institute for Health and Care Excellence distributes these guidelines for public comment and, once the guidelines are adopted, they develop and post online tools to facilitate implementation so that practices and clinicians have ready access to them. Preliminary reviews of the impact of the National Institute for Health and Care Excellence process have resulted in positive outcomes for mental health and behavioral problems [45, 100, 101].

5.3.10 Improving Clinician Training There is a growing recognition that clinician training needs to be improved. Efforts to address the gaps in clinician education include the joint initiative by The Accreditation Council for Graduate Medical Education and ABPN (2015) to create the Psychiatry Milestone Project. Residency programs now are accountable to assess trainees for level of effectiveness on observable behaviors, including psychotherapy, using tools such as the American Association of Directors of Psychiatric Residency Training (AADPRT) Psychotherapy Milestone Tracker, which requires observation either directly or via videotape [102]. Another interesting example of high-quality clinician training is the National Health Service’s Improving Access to Psychological Therapies (IAPT) program in the United Kingdom. In response to the realization that too few clinicians were trained in EBTs, the United Kingdom invested billions of pounds to develop the workforce. The IAPT program trains both Ph.D.- and Bachelor of Arts-level clinicians in EBTs. The Ph.D.-level

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clinicians, assigned to work with the more severe clinical cases, participate in a one-year postgraduate, full-time program that includes one to two days of didactics in psychological theory, and the remainder of the year in closely supervised administration of EBTs. To be certified as IAPT clinicians, trainees must demonstrate they are competent in the delivery of EBTs, and during their training use nothing but EBTs. Evaluation of the program found that access to evidence-based psychosocial treatments increased by 50% in the United Kingdom [103], with an outcome greater than was expected by IAPT [104]. A challenge to the program has been retention of therapists in the IAPT program [45].

5.3.11 Improving Continuing Education Practices Professional organizations are increasingly recognizing the need to improve both the content of continuing education courses—by focusing on evidencebased practices—and the need to apply new approaches with patients to actually see changes in practice. In 2013, for example, the American Psychological Association accepted the Quality Professional Development and Continuing Education Resolution ( improving-quality.aspx), which outlined the importance of quality continuing education programs focused on “evidence-based approach with content substantiated by the empirical literature” and taught using evidence-based education methods [105]. Additionally, ABPN has evolved the approach to board certification for psychiatrists by including requirements both to apply new practices to patients and to monitor results in a required Improvement in Medical Practice activity ( moc-activity-requirements/improvement-in-medical-practice-pip/) [106]. They have also piloted an alternative strategy for knowledge-based testing by having psychiatrists read ABPN-approved evidence-based literature and answer multiple-choice questions [107]. Another opportunity for using continuing education to improve availability of psychosocial interventions is through workplace training and systems-level change to support the delivery of these treatments. Although the Veterans Health Administration Mental Health Initiative Operating Plan to make evidence-based psychosocial treatments widely available had challenges, many of the strategies used to implement workplace training of psychosocial treatments are important to consider as part of future continuing education efforts. Provider training included initial competency-based staff training programs combined with structured and collaborative consultation,

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as well as longer-term consultation support and “virtual office hours.” All of these activities are important strategies to consider that support ongoing delivery of EBTs.

5.3.12 Improving Access to Treatment Via the “Collaborative Care Model.” One opportunity to improve the access to psychosocial interventions is to offer Collaborative Care Model (CoCM) or evidence-based mental health treatment in primary care settings [108]. In this model of care, patients are offered a full range of treatment options in the primary care setting for depression and anxiety with a behavioral healthcare manager delivering psychosocial treatments and care management, in conjunction with a primary care provider prescribing medications. While delivering appropriate medication is central to collaborative care, psychosocial treatments are also part of the package of services offered in this model. In the largest collaborative care trial to date, the IMPACT trial, patients were offered a choice of Problem-Solving Treatment in Primary Care (PST-PC), antidepressant medications, or both. In this trial, 30% of the patients enrolled in collaborative care completed a course of PST [109]. Treatment with PST-PC in primary care was an effective treatment [110] and the CoCM greatly improved access to preferred treatment, especially for counseling (74% versus 33% in usual care) [111]. Similar results were seen in a trial of collaborative care for anxiety disorders in which at the 6-month assessment, significantly more collaborative care subjects received psychotherapy (55 versus 10%). Studies have shown that almost half of patients who engage in any treatment for their mental health condition receive this care in a primary care setting [112, 113]; thus, improving access to collaborative care represents an important opportunity to improve access to psychosocial treatments.

5.3.13 Measuring Quality Measuring the quality of psychosocial interventions is highly challenging. Common methods used in research to train and monitor the quality of care (the use of independent ratings of videotapes) are not sustainable or affordable in most healthcare settings. Yet the most successful methods for ensuring high quality of care are those where clinicians are provided feedback about their patients based on performance metrics. Several studies demonstrate

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that feedback regarding outcomes and session effectiveness, coupled with clinical advice, improved adherence to evidence-based care and overall quality of delivery of care [81, 114–118]. Data further show that feedback and treatment recommendations to practitioners can also prevent early treatment termination (dropout) [119]. An example of a successful feedback and quality model is the automated Outcome Questionnaire developed by Lambert in 2017, where a series of patient-reported outcomes are collected via computer and automated feedback is provided to the clinician with recommendations for which EBTS or strategies clinicians might want to provide to improve patient outcomes and enhance treatment engagement. This system has a strong evidence base in community mental health settings [114–118].

5.3.14 Creating Fair Incentives for Delivery of EvidenceBased Treatments Via Value-Based Care and Payfor-Performance The movement toward value-based health care may present an opportunity to promote more access to quality psychotherapy as part of routine care. Under value-based care models, reimbursement is determined based on meeting specific health outcomes metrics. Behavioral health metrics, such as screening and response to treatment for depression, are increasingly included in accountable care contracts in recognition that patients with chronic medical and comorbid mental health/substance use disorder (MH/SUD) conditions can be 2–3 times more common in practice than those patients who do not have the comorbid MH/SUD conditions [120, 121]. Organizations such as the National Committee for Quality Assurance have defined standards for Depression Remission or Response for Adolescents and Adults ( and in order to meet these metrics [122], practices are increasingly turning to measurement-based treatment-totarget approaches. Furthermore, practices are offering a range of treatment modalities to patients when the first approach to treatment is not effective. Studies such as the STAR*D trial include offering evidence-based psychosocial treatments as an important treatment option in this type of stepped approach [123]. This focus on quality and response to treatment being tied to payment may offer the opportunity to promote the use and focus on quality of psychosocial interventions. Additionally, many accountable care contracts tie value to patient experience and thus offering psychosocial treatment may be advantageous to an organization given the numerous studies demonstrating patient preference for psychosocial interventions. Other new

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models of payment also allow for a broader array of providers to be part of the available workforce to deliver psychosocial treatments. For example, in 2018 there will be CPT codes allowable for Medicare to reimburse the psychiatric CoCM [124]. Under these new codes, Medicare will reimburse a wider range of clinicians for the psychological treatments they deliver; thus, this expanded range of clinicians can serve in the behavioral healthcare manager role, which means an expanded workforce who can deliver psychosocial treatments. There is evidence to show that incentives for providing EBTs can effectively increase access and quality of care. Research into these programs requires the ability to accurately measure clinical outcomes as well as take into consideration practitioner case mix. In 2017, the United Kingdom introduced methods for pay-for-performance (P4P) under the IAPT program, mentioned previously. Included in these methods was setting the price for incentives based on quality outcomes as well as case complexity: paying practitioners more for complex case mixes prevents “cherry-picking” of cases. As this is a recently implemented program, there are no data yet to assess its efficacy. Research on P4P in mental health, not specific to psychotherapy, does find that incentives for care do improve patient outcomes and quality of care [125–130], although it should be noted that P4P alone, in isolation of practitioner training and system-level adjustments (e.g., allowing for more frequent and longer visits for cognitive-behavioral therapy to treat posttraumatic stress disorder), is not effective [131].

5.4 Conclusion The extant literature supports the need to have a balanced offering of both psychosocial and pharmacological treatments for mental health conditions. Policy needs to incentivize systems to (a) offer all types of care, (b) ensure providers can actually deliver that care, and (c) enable patients to move smoothly and efficiently through the system. To deliver effectively on these three points there must be consensus—based on systematic and independent review of the literature—regarding which treatments are effective for given mental health problems in given populations. Training and credentialing must be dependent on demonstrated competency in evidence-based interventions; ongoing certification should also be tied to continued use of these models. Clinicians must be incentivized to provide psychosocial treatments in addition to pharmacological treatments and be reimbursed for offering care in accessible modalities. Models from the United Kingdom and Australia are good starting points for how policy can drive service use.

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6 Are There Enough Inpatient Psychiatric Beds? Eric Slade and Marisa Elena Domino

6.1 Framing the Issue In this chapter, we examine key issues and controversies surrounding whether the current psychiatric inpatient bed supply is adequate or alternatively whether more psychiatric beds are needed. Assessing psychiatric bed need is a challenging and uncertain task. Psychiatric service systems are constantly changing in ways that can affect overall psychiatric bed need within a region, and consequently optimal bed capacity is a moving target. Since the 1960s, two of the most consistent trends in the delivery of hospital-based psychiatric services have been a decline in per capita psychiatric inpatient utilization accompanied by reductions in inpatient beds located in specialized psychiatric hospitals. Both trends have spanned and been fueled by major changes in federal and state mental health policy, insurance reimbursement practices, the scientific evidence base of mental health treatments, and care management practices. The resulting decline in spending on

E. Slade (*)  Johns Hopkins School of Nursing, Baltimore, MD, USA M. E. Domino  Department of Health Policy and Management, Gillings School of Global Public Health and Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, NC, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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inpatient care has also coincided with increased spending on the delivery of psychiatric services in non-institutional or “community-based” care settings. These changes in practice patterns raise important questions about the current and future need for additional specialty psychiatric beds. To some extent, one’s view of whether psychiatric bed capacity is now too low or too high may depend on how one balances the competing mental health service-system goals of supporting personal independence, selfdetermination, and recovery from illness versus the goal of providing secure institutional living situations for individuals who cannot safely live in their communities. At the heart of the current debate about beds is controversy over whether spending on inpatient psychiatric care should be increased, even if one consequence of such an increase would be less spending on outpatient psychiatric care and other community-based supports. On the one hand, some observers argue that there now exists a critical shortage of psychiatric inpatient beds in the United States and that this shortage justifies greater spending on beds. On the other hand, bed shortages, and consequently the need for additional specialty psychiatric beds, could vary considerably among the different regions of the country. From this perspective, increased spending on beds could impede the growth of outpatient care services, which are limited in many communities and regions of the United States, and furthermore that continuing changes in how psychiatric services are organized or practiced may further reduce the need for existing inpatient bed capacity. In this Framing section of the chapter, we provide background information relevant to understand the present-day debate surrounding psychiatric inpatient bed supply. In the Questions section, we introduce the reasons why psychiatric inpatient beds are needed and characterize the array of factors that conceptually are related to bed need. In the Evidence section, we summarize the available empirical evidence on the adequacy of the current bed supply and review some of the methodologies behind those estimates.

6.1.1 Psychiatric Inpatient Beds in the United States Inpatient care for individuals with acute emotional or behavioral problems is provided by various types of institutions licensed to provide 24-hour facility-based care, including state and county psychiatric hospitals, private psychiatric hospitals, psychiatric units of general hospitals and federal hospitals for active duty military personnel and military veterans, residential

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treatment facilities, and crisis clinics. Here we adopt the Medicare term Inpatient Psychiatric Facilities (IPFs) to refer collectively to all acute-care 24-hour hospital beds designated for specialty psychiatric care. Some additional acute-care 24-hour specialty psychiatric inpatient beds are located in residential treatment facilities, crisis clinics, prisons, and other non-hospital settings not licensed as IPFs.1 Some intensive psychiatric outpatient programs, such as assertive community treatment (ACT) and partial hospitalization, also extend IPF capacity by providing specialized outpatient alternatives to continuing psychiatric inpatient care. Individuals with serious mental illnesses may be referred to one of these programs either as a step-down from an IPF or as a substitute for IPF care. ACT is a 24-hour, 7-days-a-week mobile psychiatric service that is designed to provide time-unlimited care to severely ill individuals who otherwise would likely be living in an institution. Partial hospital programs are hospital-based and offer intensive psychiatric care during the daytime. Many hospitals and public mental health systems also run community crisis beds, which are rooms in designated residential houses or buildings that offer 24-hour care in a safe residential setting that is staffed 24 hours a day by mental health professionals [1]. These settings are considered appropriate for individuals who need more structure and support than is available in outpatient care services but who do not require intensive medical supports that are available in hospitals, and as a result they are substantially less expensive than IPF beds. Lengths of stay in crisis beds may be from a couple of days to several weeks. The availability of crisis beds varies by state and local area. While some states allow Medicaid reimbursement of crisis bed stays, others do not [2]. Additionally, some beds that are not specifically designated for psychiatric care are in fact utilized by individuals with psychiatric conditions, and consequently may in essence serve as additional psychiatric inpatient capacity. These non-specialty beds include “scatter beds,” which are hospital beds located in general medical wards, hospital observation and emergency department beds, beds in rehabilitation hospitals, and long-term care beds in intermediate care facilities, nursing homes, and other long-term care institutions [1]. Nevertheless, common alternatives to providing inpatient care in a specialty psychiatric bed continue to be controversial. Admission to a specialty psychiatric bed is thought by many clinicians and observers to ensure at least a minimal standard of quality and safety, and alternative settings may be clinically inappropriate for some individuals.

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6.1.2 Deinstitutionalization The deinstitutionalization era of the latter half of the twentieth century continues to frame the present-day discussions of psychiatric bed need. The deinstitutionalization “movement” began as a moral and ethical reaction to the squalid living conditions and coerciveness that were prevalent in many psychiatric institutions [3, 4]. Proponents saw deinstitutionalization as being instrumental in improving the lives of individuals with mental illness. The movement gained momentum in the 1950s and 1960s during a period of innovation in psychotropic treatment of mental disorders [5]. The discovery of effective “first generation” antipsychotic medications such as chlorpromazine, developed in 1950 and approved in 1954, strengthened the argument for deinstitutionalization [4]. Psychotropic medications promised to improve the feasibility of community treatment for individuals with schizophrenia and other psychotic disorders [6]. As a result, discharging individuals from state institutions to the community became more viable during this period. A decline in the length of stay for acutely ill patients also contributed to a decrease on the number of beds in psychiatric inpatient facilities; shorter lengths of stay for newly admitted patients meant that fewer beds were needed for the same volume of admissions. These ideas motivated various policy changes that led both to a steep decline in residents of state and county psychiatric hospitals and in major changes in how and where psychiatric care is provided [6, 7]. Although many mental health patient advocacy groups welcomed deinstitutionalization as a progressive and needed policy change (for example, see [8]), some advocates view the resulting decline in beds at state and county psychiatric hospitals as having resulted in a severe nationwide psychiatric inpatient bed shortage [9]. Some commentators also have ethical concerns about permitting homelessness or isolation of persons with severe mental illness, and view those with severe illnesses as needing a basic guarantee of access to a bed in a public institution, a guarantee paid for by taxes. During the 1950s and 1960s aspirations for deinstitutionalization stood in stark contrast to the sparse landscape of existing community-based inpatient and outpatient specialty mental health clinical programs [6]. A 1961 Joint Commission on Mental Illness and Health report “Action for Mental Health” recommended the closure of state hospitals and the creation of community mental health clinics to provide community-based care [4]. The Joint Commission report also recommended increased federal fiscal responsibility of individuals with chronic mental illness. The report was cited by President John F. Kennedy in a 1963 speech to the US Congress, who called

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for an expansion of community-based services and a transition away from institutional care [4, 10]. This speech was followed in the same year by the Community Mental Health Centers Act, which authorized federal grants for building clinics and specified an array of services [4]. Although the Community Mental Health Centers Act provided construction funding and incentivized states to discharge patients from state psychiatric hospitals, federal funding for mental health care provided outside of state institutions remained limited [11] until the 1965 amendment of the Social Security Act establishing the Medicare and Medicaid programs. The establishment of the Medicare and Medicaid programs gave states’ access to a stable pool of federal financing for healthcare services, including mental health inpatient and outpatient services, psychotropic medications, and emergency department services for those eligible [12]. These programs initially covered elderly adults and low-income families, respectively. Nonelderly disabled adults receiving Social Security Disability Insurance (SSDI) benefits, including many individuals with mental illnesses, were added to Medicare coverage in 1972, along with those who received Medicaid as a result of eligibility for the newly created Supplemental Security Income (SSI) program. Access to Medicare and Medicaid financing also made deinstitutionalization financially more attractive by discharging patients from state psychiatric institutions and transferring them to Medicaid and Medicare-reimbursed settings, such as general hospitals. In principle, with these transfers States could unload half or more of their Medicaid-eligible costs of services onto US federal government sources, via federal-state Medicaid cost sharing. As states shifted costs to federal sources, many long-term residents of state psychiatric institutions were transferred to other community-based locations, such as private nursing homes and outpatient clinics [7]. Some were moved to long-term residential programs and were named wards of the state. As public hospitals lost many of these inpatients and their associated expenditures (i.e., revenues to the hospitals), many psychiatric beds became unoccupied and were subsequently closed [7]. Some of these expenses were shifted to other types of IPFs. Importantly, because of the tradition of state funding for public psychiatric institutions, the legislation included restrictions on Medicare and Medicaid payments for long-term psychiatric inpatient care provided in state and private psychiatric institutions. These restrictions incentivized a shift in the delivery of psychiatric inpatient services from long-term care beds in state and private psychiatric hospitals to short-term beds in general hospitals, which were not subject to the same restrictions on Medicare and

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Fig. 6.1  Number of state and county psychiatric resident patients (end-of-year) and annualized percent reductions: 1955–2013 (Source Authors’ calculations from Geller [6] and Lutterman et al. [13])

Medicaid payments [12]. Thus, political momentum spurred by proponents of deinstitutionalization, financial incentives introduced by Medicare and Medicaid, and advances in psychiatric treatment were some of the key factors that led to a period of rapid deinstitutionalization from state and county hospitals [12]. Figure 6.1 shows the sharp decrease between 1955 and 1979 in the endof-year census of resident patients in state and county psychiatric hospitals during the period of deinstitutionalization [6, 13]. During this twenty-five year period, the number of residents in state psychiatric hospitals declined by 75%, from 559 thousand patients in 1955 to 140 thousand patients in 1979. The initial decline accelerated after the introduction of Medicare and Medicaid in 1965 through the expansion of Medicare to non-elderly disabled adults, reaching a remarkable 10% annual reduction in 1972. The pace of deinstitutionalization slowed in the late 1970s, yet the number of state hospital residents has continued to decline up through the most recent year of available data. As patient censuses declined and beds in state hospitals were closed, many state institutions were closed so that utilization could be consolidated at the remaining state institutions [6]. Figure 6.2 shows that much of the dramatic decline in the number of psychiatric beds was from state and county psychiatric hospitals [14–19]. Whereas in 1970 there were 204.5 beds in state and county psychiatric hospitals per 100,000 US civilians, by 2014 this number had decreased to 12.0 beds per 100,000 US civilians, a reduction of 94.1%. This period can

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Fig. 6.2  Psychiatric inpatient beds per capita in US non-federal hospitals: 1970–2014 (Sources Authors’ calculations using information from Census [14, 15], CMHS [16], and SAMHSA [17–19])

be subdivided into an initial phase, up to approximately 1980, when bed supply was quickly decreasing followed by a period lasting until around 1990, during which total beds in private psychiatric hospitals and nonfederal general hospitals per 100,000 civilians nearly doubled, from 20.6 beds in 1980 to 40.1 beds in 1990, and overall psychiatric bed supply remained stable. However, since the early 1990s, the total number of psychiatric beds has declined both in state hospitals and in other hospitals reaching a low of 33.7 beds per 100,000 civilians in 2014 [14–19].

6.1.3 Changes in the Population Served in State Psychiatric Hospitals Although state psychiatric hospitals historically provided short-term treatment and long-term care supports for a diverse population, including individuals with intellectual disabilities, dementia, and other organic brain disorders, these latter special populations requiring ongoing care are now usually served in other settings [20]. According to a 2017 report from the Treatment Advocacy Center, in 1970 individuals aged 65 years and older represented 29% of residents in state and county psychiatric hospitals and individuals with diagnoses of intellectual/developmental disabilities represented 9% of such residents [9]. By contrast, in 2014, only 8.8% of state and county psychiatric hospital residents were 65 and older, and as of 2005,2

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only 3.8% of such residents had an intellectual/developmental disability diagnosis. As inpatient care for these special populations has been shifted to other service delivery settings, residents of state psychiatric hospitals are increasingly comprised of individuals who have been involuntarily committed and by individuals referred by courts for evaluation and treatment [13].

6.1.4 Stakeholder Perspectives One legacy of deinstitutionalization is a persistent continuing debate regarding whether the resulting elimination of psychiatric inpatient beds in state psychiatric institutions was a short-sighted policy. Prominent national stakeholder organizations representing individuals with mental illnesses and their families hold strongly conflicting views regarding this question, highlighting a natural tension that exists between greater public spending on increased bed capacity in long-term care psychiatric institutions, on the one hand, and greater public spending on expanded community mental health treatment systems, on the other hand. The Treatment Advocacy Center represents one side of this debate. The Treatment Advocacy Center’s founder E. Fuller Torrey, a noted psychiatrist who formerly worked at a public mental hospital in the District of Columbia, has frequently lamented the existence of psychiatric bed shortages and the lack of an accepted standard for determining how many psychiatric beds are needed in public systems. He has also pointed to circumstantial signs of a bed shortage, such as long wait times for psychiatric care in US hospital emergency departments, criminal incarcerations of individuals who may instead need long-term residential care, and homelessness among individuals with mental illness [21]. Many other healthcare providers and provider organizations have also expressed concerns about overcrowding in hospital emergency departments and bed shortages in community hospitals [13, 22, 23]. Observers often point to the many patients who spend more than 24-hours in emergency departments waiting for a psychiatric bed to become available as evidence of a shortage [24–26]. Often these patients are restrained on gurneys and may be boarded in hallways, situations that are less than ideal for any patient, let alone individuals experiencing psychiatric crises. By contrast, on the other side of this debate, the Bazelon Center opposes institutionalization because institutional placements restrict individuals’ autonomy and results in their segregation and isolation from communities and families. It consequently advocates for greater investment in noninstitutional community-based outpatient care, housing supports, and

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limited delivery of care in psychiatric institutions. The Bazelon Center also opposes institution-based care because providing care only in such settings may discourage treatment seeking among persons with untreated psychiatric symptoms [8]. The central challenge in reconciling these differing priorities is that public financing for mental healthcare delivery is a limited resource. In the current era, in which many if not most state government budgets are severely strained by competing spending priorities, any increases in budgetary expenditures on the expansion of psychiatric inpatient bed capacity are likely to result in offsetting reductions in spending on other mental health services, including community-based outpatient mental healthcare programs and prevention services. The consequences of such a shift in spending priorities are uncertain and are the subject of services research and policy analyses. An additional challenge comes from the observation that bed shortages are generally local phenomena, shaped by local conditions in hospital supply and the supply of other resources, such as intensive outpatient services and alternative residential opportunities in a community. For example, the Dartmouth Atlas [27] has created over 3400 Hospital Service Areas for general hospitals based on utilization patterns by Medicare beneficiaries. While no such system exists for psychiatric hospitals, IPF use would likely be closely aligned with general hospital use, as described above, yielding market areas that are much smaller than state boundaries. As a consequence, statewide or national policy changes may not be the most efficient strategy for addressing a local problem given the considerable variation in the bed supply and related factors.

6.1.5 Sources of Payment for Psychiatric Inpatient Beds The financing arrangements used to pay for psychiatric inpatient care influence psychiatric inpatient utilization, and to some extent, these changes in financing have been motivated by the differential implications for insurance plans and public program budgets of providing psychiatric care in inpatient versus outpatient settings. In virtually all states, public mental health systems have increasingly relied on Medicare and Medicaid as the primary sources of payment for public mental health services. Medicare is funded entirely through Federal Government sources while the greater use of Medicaid allows states to claim Federal Government matching funds, which are inversely related to states’ per capita income starting with a minimum Federal match of 50%. By shifting psychiatric care costs from state

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and local budgets to Federal sources, states have been able to leverage limited state funding for public mental health care. Increasing reliance on Federal Government funding through the Medicaid and Medicare programs, however, has meant that the rules of reimbursement in these programs increasingly dominate state decision-making, one of the essential points made by Richard Frank and Sherry Glied [12]. In particular, both Medicare and Medicaid have steered public spending away from state psychiatric institutions and toward psychiatric inpatient services in general hospitals. The effects of Medicaid’s prohibition on payment for inpatient services provided to individuals between ages 21 and 64 in any specialty psychiatric hospital or “Institute for Mental Disease” (IMD) that has 17 or more beds have been particularly stark. The IMD rule has the effect of steering Medicaid enrollees in need of inpatient psychiatric care toward general hospitals’ psychiatric units, which are not subject to payment restrictions, and away from state and private psychiatric hospitals. Medicaid enrolled individuals (between the ages of 21 and 64 years) are now infrequently admitted to state psychiatric hospitals, resulting in a dwindling of inpatient stays at state psychiatric hospitals and in a concentration of uninsured and forensic clients occupying state hospital beds. In other words, the state psychiatric hospital has become the treatment location for individuals who do not otherwise qualify for federally funded services or for whom federally funded alternatives to psychiatric institutional care do not exist. Medicare’s coverage of inpatient hospitalizations also has limitations. Hospital coverage is provided through Medicare’s Part A and covers services in specialty psychiatric hospitals as well as in general hospitals after deductibles have been met, subject to the standard Part A coinsurance. Medicare Part A has a lifetime limit of 190 days in specialty psychiatric hospitals. No recent evidence exists on how often this limit is reached, although an unpublished ASPE report from the 1990s found that this occurred very infrequently (H. Goldman, personal communication, October 15, 2017).

6.1.6 Managed Care and Innovative Payment Models In the 1980s and 1990s, regulatory changes and financial pressures fueled a shift toward greater use of managed behavioral healthcare practices, which in turn drove further reductions in inpatient utilization [28, 29]. The growth of the managed behavioral healthcare industry has been attributed largely to states abandonment of Certificate-of-Need (CON) requirements for the construction and expansion of hospitals [28]. The elimination of

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CON requirements removed regulatory barriers to growth. As a result, during the 1980s there was rapid growth in the number of private psychiatric beds. This growth in turn resulted in a sharp increase in expenditures for psychiatric inpatient services. Managed behavioral healthcare organizations arose in this context, and their immediate priority was to control the use of inpatient care and rising costs [28]. Capitated, or risk-based systems, first implemented by managed behavioral healthcare organizations, alter the incentives of managing expensive services such as inpatient care, by putting managed behavioral healthcare organizations and providers at risk for the overall costs of an individual’s care. Capitation can cover a limited set of services such as behavioral health services only, referred to as a carve-out, or a comprehensive set of behavioral and general medical services. Under capitation, providers are paid a monthly rate regardless of service use. These revenues are used to pay the costs of services used, with surpluses or shortfalls left to the managed care organization. Compared with fee-for-service payment and other cost-based reimbursement arrangements, capitation gives providers a stronger financial incentive to substitute whenever possible less expensive community-based outpatient services for additional days of inpatient hospitalization. Starting in 2005, Medicare began paying for most inpatient psychiatric services using a prospective per-diem payment system, meaning that Medicare specifies different daily reimbursement amounts for different days of the inpatient stay. A base daily rate for inpatient psychiatric services is adjusted for a number of factors specific to the stay, including patient age and diagnoses, hospital characteristics, and a Medicare geographic adjustment for wage differences. Prior to IPF-PPS, most IPFs were paid for their “reasonable costs” under the Tax Equity and Fiscal Responsibility Act of 1982 (i.e., using cost-based reimbursement). Although IPF prospective payment system (IPF-PPS) rates were set to be budget neutral to hospitals, overall payments to some hospitals likely increased while payments to others likely decreased from prior payment levels under TEFRA. In particular, under the IPF-PPS per-diem model, hospitals receive higher payments for individuals with multiple chronic conditions, to compensate hospitals for these patients’ higher expected daily costs [30, 31]. This approach could make individuals with comorbidities a substantially preferred group for hospitals to treat if payments exceed actual costs, or could have the opposite effect if costs for these individuals exceed payments [32]. Medicaid payments to hospitals are less standardized nationally, depending on the specific design of the state’s Medicaid program and its use of managed care, although many states also follow a capitation payment system.

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Another method of financing is through global budgets, where hospitals or other healthcare facilities are given a fixed budget and retain the risk both for the amount of spending per person as well as for the size of the service-using population. In the United States, global budgeting is widely used to finance state psychiatric hospitals, although these facilities can recoup some of their expenses by billing insurance programs. Global budgeting of all hospital care, including psychiatric services, was implemented statewide in Maryland in 2014 [33]. Global budgeting is also used within the US Department of Veterans Affairs (VA) healthcare system and is widely used outside the United States in other countries’ healthcare systems [34].

6.2 Questions The above trends and policy context make evident that the number of psychiatric beds needed in a community is not a one-size-fits-all solution. In order to better understand the need for psychiatric beds in a given region, there are a number of important questions that arise. Some of these questions have been around for years while others are emergent from recently evolving policies and practices in the mental health field.

6.2.1 Why Do We Continue to Need Psychiatric Inpatient Beds? While significant advances have been made in effective community-based treatment of mental disorders, it is likely we will never be without the need for psychiatric inpatient beds for individuals needing the security and medical safety offered by IPFs, which provide observation within a secure (i.e., locked door) hospital unit with 24-7 physician and nursing staff support. Medical screening is part of the IPF intake process, and consequently general hospitals as well as some specialty psychiatric hospitals also maintain an onsite capacity to perform needed medical screening and address emergent medical issues. Inpatient lengths-of-stay in IPFs vary among facilities and regions, and depend on patients’ individualized treatment needs, but today normally range from a few days to up to three weeks [35]. There are several categories of needs for inpatient psychiatric beds. The largest group of inpatients in IPFs includes individuals with severe psychiatric disorders, such as schizophrenia or schizoaffective disorder, bipolar disorder, or other severe affective and psychotic disorders who have recurrent

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episodes of mental illness resulting in hospitalization and who typically have severe limitations in social functioning [36–38]. Such individuals may lack the necessary social and economic supports required for sustained community tenure [39, 40]. Two important subsets of this group are elderly individuals with dementia, delirium, and other organic brain disorders, who may have lengthier IPF stays [40] and individuals with co-occurring medical and substance use conditions. Coordinating care for these groups across multiple systems and providers often delays inpatient discharge. Some patients with these needs are discharged directly to an ACT team if available [41], a model which was designed to provide a hospital level of care in the community. A second subset of IPF inpatients includes individuals who are experiencing acute psychiatric crises, whose thoughts or behaviors may indicate a risk of physical harm to themselves or others [42]. Suicide attempts, intentional self-injuries, and physical assaults on others are prevalent safety concerns in this group [43]. Acute intoxication from alcohol or illicit drugs are often prevalent symptoms as well [43]. Many individuals in this group are elderly and may also present with acute agitation [44]. For such individuals, hospitals offer the benefits of a physically secure treatment environment, 24-hour medical staffing, specialized expertise in the use of psychiatric medications, and in some cases the capacity to deliver electroconvulsive therapy (ECT). A third category of need is represented by individuals who pose a serious risk of physical violence to other people [10] and consequently who are involuntarily hospitalized or enter state hospitals via the forensic evaluation process. Approximately 82% of state hospitals’ patients are involuntary admissions either civil commitments (that is, individuals with impaired reasoning whose inpatient psychiatric care is court-ordered) or forensic patients (that is, individuals who are being assessed under criminal statutes for mental competency to stand trial, have been found not mentally competent to stand trial or have been remanded to a state hospital by a court) [10, 13]. This group has limited access to other IPF settings, as many general hospitals do not approve admissions of individuals who may be difficult to discharge and who may display inappropriate sexual or other problematic behavior that would place other patients or staff at risk [10]. As a result, state psychiatric hospitals’ current primary function has been aptly described as: “the management of people deemed inappropriate—for behavioral, financial, or other reasons—for placement in alternative mental health settings” [10]. A fourth category with specialized needs for IPF stays is children and adolescents. As a result of their legal status as minors in the care of adults as well as their comparative immaturity and vulnerability to mistreatment, children and adolescents require a specialized inpatient treatment setting.

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Child and adolescent psychiatric inpatient beds are typically located in specialized inpatient units that are physically separated from inpatient units for adults. Children and adolescents who have severe emotional and behavioral disorders are a special subgroup with higher risk for needing an institutional level of care [45]. This subgroup represents 6–10% of all children, depending on criteria for functional impairment [46]. Such children are disproportionately concentrated in special education programs and child welfare and juvenile justice systems [45, 47].

6.2.2 How Are Community Needs for Psychiatric Inpatient Bed Capacity Assessed? How bed needs are assessed and prioritized in a system of care can dramatically affect estimates of total needed beds. A region’s total population size, historic annual rate of psychiatric inpatient utilization, and average length of stay are key parameters in empirical models used to estimate the expected annual number of psychiatric inpatient days in a region, and consequently the number of needed psychiatric inpatient beds [20, 48, 49]. However, the practice of estimating bed needs was reduced considerably in the US post deinstitutionalization era and thus progress in advancing the technique of bed need estimation was also halted. Models using historic rates of inpatient utilization in a population are not designed to answer “what if ” questions regarding changes in other factors (such as access to supported housing) that are designed to increase community tenure and foster patient engagement with outpatient services and adherence to prescribed medications. Unoccupied bed capacity in IPFs is a key indicator used to assess slackness in IPF bed utilization within a regional system. Occupancy rates, or the proportion of staffed beds that are filled on any given date, are presumably correlated with the level of need (or economic “demand”) for IPF beds. A lower occupancy rate implies greater spare capacity, slackness in the system, and also indicates potentially greater overall inefficiency. By contrast, a higher occupancy rate implies less spare capacity, less slackness in the system, and consequently greater risk of a bed shortage on any given day. Decision leaders in regional health systems or in state governments may vary in their tolerance for potential inefficiency in their IPF sector, and consequently may vary in their willingness to pay for spare bed capacity. The opportunity cost of maintaining spare bed capacity (i.e., the economic cost) is that resources committed to adding and maintaining unused beds could otherwise have been committed elsewhere in the mental health

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system, where one result might have been less need for inpatient beds. On the other hand, a bed shortage coupled with state policies that restrict hospitals from exceeding a bed occupancy of 100% could contribute to emergency department use [50] and to emergency department boarding. This tradeoff between bed inefficiency and bed shortage risks is inherent to the problem of choosing an ideal IPF bed capacity. Assessing bed need also involves assessing the level of access that potential inpatients have to other inter-related service systems, such as public housing supports, residential rehabilitation, ACT, and others. As described above, outpatient mental health systems and their providers, housing programs that may serve populations with mental illness, and changes in the generosity of Medicaid or other public insurance benefits also likely affect the level of need for IPF beds. In principle, it should be possible to quantify the size of each of the population groups needing IPF services, described above, and then project the number of IPF days as a function of population size, population characteristics, and the availability of services in inpatient and in alternative settings, such as community-based residential options, partial hospitalization programs, ACT teams, time critical crisis stabilization, peer supports, and others. All of these programs could influence the volume of IPF stays. Another factor to consider when developing a measure of the need for IPF services is the effectiveness of community-based treatments, such as pharmacotherapy, psychotherapy, and other clinical interventions, public health interventions, and targeted preventive interventions in reducing a given population’s need for psychiatric inpatient care. Empirical evidence regarding the potential of various types of interventions to reduce bed need at a population level is extremely limited but growing. Finally, the need for additional psychiatric bed capacity also depends on one’s perspective regarding what constitutes acceptable treatment of individuals with psychiatric illness and on one’s willingness to contribute financially to governmental initiatives undertaken to improve the quality of care. People view the adequacy of current bed capacities through the prism of their own values and experiences. For those whose family member has a severe mental illness, the option of placing their relative in a long-term care bed in a state psychiatric institution might seem more appealing than many other alternatives such as homelessness or incarceration, and consequently the need for added beds may be more pressing. Others may be more skeptical of the benefits of institutional care and may instead prefer either no additional spending on mental healthcare systems or additional spending to strengthen community-based mental health treatment systems, supported

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housing arrangements, and prison-based mental health treatment services. Various communities may also vary in their preferences for using resources to retain excess capacity for times of potential future high demand.

6.2.3 How Does the Cost of Maintaining a Bed Influence Goals for Bed Capacity? The budgetary costs of additional IPF beds and the payments that hospitals receive in return for psychiatric inpatient utilization are thought to influence states’ and hospitals’ decisions about expanding IPF bed capacity. The costs of additional IPF beds may include building construction and maintenance costs as well as additional operating costs associated with administrative functions and staffing costs for nurses, psychiatrists, social workers, and psychologists who provide services for hospital inpatients. The construction and operating costs of additional IPF beds vary depending on the specific type of inpatient facility, its location, the amenities that the facility offers (e.g., private rooms versus group quarters), and the clinical characteristics of inpatients [31, 51]. There may be added costs for beds intended for use by patients with severe behavior problems, severe cognitive impairments, and complex medical issues, because these patients require a greater intensity of staff effort and perhaps require specialized facility accommodations (e.g., a more secure facility setting). In order to expand the bed supply, state agencies and hospitals require both access to any needed capital financing and assurance that future payments for inpatient utilization will cover the operating costs of any new beds. Hospital administrators are likely to consider whether additional psychiatric beds are a wise investment compared with all alternative uses of limited hospital space and capital resources. Although data on the profit margins attributable to different types of hospital beds are scarce, anecdotal reports suggest that profit margins on psychiatric beds are lower than those of medical-surgical beds [13, 52], and there is ample evidence that managed behavioral healthcare practices have resulted in sharply lower insurance reimbursement for psychiatric inpatient care [13, 28, 53]. Another factor that influences IPF bed costs and consequently decisions about bed supply is the ongoing shortage of specialty mental healthcare providers, especially psychiatrists [54, 55]. The workforce demands of provider organizations in most regions of the United States exceed the availability of mental healthcare specialists, especially prescribers [55]. Recruiting providers to rural and lower-income areas is particularly difficult [55, 56].

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This professional shortage may complicate and make more expensive initiatives to expand the number of IPF beds, because new beds must be staffed with psychiatrists and psychiatric nurses. Also, an increasing number of rural and even some urban hospitals may lack any psychiatric specialists on-site. Hiring a sufficient number of psychiatrists at state psychiatric hospitals may also be challenging in many cases, as state hospitals may seem a less attractive potential employer to early career psychiatrists than a private psychiatric hospital or a general acute care hospital.

6.2.4 How Can Healthcare Policy Influence Bed Capacity and the Capacities of Community Mental Health Treatment Systems? Policy-based restrictions on funding to certain IPFs by certain payers are largely responsible for our current distribution of IPF care. As shown in Table 6.1, general hospital stays currently account for a larger share of IPF care than do either state psychiatric hospitals or private psychiatric hospitals. The IMD restriction in Medicaid as well as the Medicare maximum lifetime limits for care provided in psychiatric hospitals has driven public mental IPF care toward general hospitals and away from IMDs, although current research examining these impacts is lacking. Medicare’s introduction in 2006 of prospective payments for care delivery in IPFs could have influenced the Table 6.1  Inpatient beds in specialty psychiatric care settings in the United States, 2016 Type of facility/program






Inpatient Psychiatric Facilities (IPFs) General hospitals State psychiatric hospitals Private psychiatric hospitals VA medical centers

35,395 32,995 30,991 2673

33.2 31.0 29.1 2.5

Other Types of Facilities with 24-hour acute beds Residential treatment facilities (RTFs)a Outpatient mental health programsb Multi-setting mental health facilities

1569 1657 1206

1.5 1.6 1.1

Source Substance Abuse and Mental Health Services Administration, National Mental Health Services Survey (N-MHSS): 2016. Data on Mental Health Treatment Facilities, Table 2.10. BHSIS Series S-98, HHS Publication No. (SMA) 17-5049. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2017 aIncludes only beds in short-term inpatient units of RTF’s bIncludes crisis, respite, and other short-term beds in clinics

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bed supply in general hospitals depending on how the implementation of the prospective payment formula affected hospitals’ revenues net of costs for psychiatric inpatients. Compared to the cost-based TEFRA reimbursement system that Medicare had previously been using, prospective payment could make psychiatric inpatient care less lucrative to hospitals and therefore may have impeded further bed growth. The growing crisis of extended emergency department stays (i.e., of emergency department “boarding”) by individuals with mental illnesses waiting for placement in specialty hospitals may be both a barometer of the need for a greater balance of IPF setting as well as a catalyst to policy leaders to further expand options for outpatient treatment and community living. The enactment of the Affordable Care Act in 2010 has the potential to alter the settings in which people with mental illness receive care through greater expansion of insurance coverage and better coverage of mental health treatments. The ACA was implemented closely after the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA), which also increased the generosity of insurance coverage of mental health to be on par with general medical benefits but applied only to group plans. The ACA later extended its provisions to individual insurance plans as well [57]. MHPAEA required a more comprehensive level of parity than did most prior legislation, including requiring plans to have no more restrictive limitations on covered inpatient days than for medical or surgical benefits. In theory, if greater coverage through the healthcare exchanges or through Medicaid expansions in selected states decreases the out-of-pocket prices for community-based care and medications, more people with mental illnesses may receive these services, possibly reducing the use of inpatient services. In addition, the ACA required all plans offered through the ACA’s health insurance market places to cover essential benefits, such as mental health and substance abuse services, as well as depression screening. In practice, increased insurance coverage lowers the out-of-pocket price for both outpatient and inpatient services, potentially increasing the demand for both. The ACA also contained a grant demonstration program to states to help transition long-term residents of institutions including IPFs into the community [58], potentially reducing the demand for IPF services. Psychiatric inpatient utilization across various types of institutions is also constrained by federal laws and court decisions related to the rights of mental health consumers and hospitals’ responsibilities regarding patients with acute psychiatric symptoms. Some of the key laws in these areas are the Civil Rights of Institutionalized Persons Act (CRIPA), the Americans

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with Disabilities Act (ADA), and the Emergency Medical Treatment and Labor Act (EMTALA). Both the CRIPA and the 1990 US Supreme Court Olmstead ruling based on the ADA mandated that individuals with mental illness be offered community-based alternatives to institutionalization whenever such accommodations are feasible [13], although the financing of those accommodations was not mandated. EMTALA is a federal law that requires anyone coming to a hospital to be stabilized and treated, regardless of insurance status or ability to pay. Since its enactment in 1986, EMTALA has remained an unfunded mandate on hospitals that have a traditional emergency department or that offer emergency psychiatric intake assessments for persons who have acute psychiatric symptoms. Under EMTALA, a hospital is effectively required to keep acutely ill patients, including psychiatric patients, in their emergency department or hospital wards until the patients can be admitted to a different inpatient facility, or until a patient’s symptoms have been stabilized. Depending on bed availability at the hospital and at other hospitals in the same region, there may be substantial delays in finding an available bed [59]. Although evidence on the impacts of EMTALA is limited, EMTALA is frequently cited as having been a key factor in the increased use by hospitals of 23-hour “observation units” [60], which serve as holding areas for patients who have not been admitted to an inpatient bed but whose conditions are not stable and who consequently cannot be discharged from the hospital. Outpatient commitment laws, also referred to as assisted outpatient treatment, are a tool used by some states to allow a judge to sentence an individual to receive involuntary outpatient treatment. By virtue of engagement in outpatient care, albeit through coercion, outpatient commitment laws can reduce the use of IPFs for voluntary and involuntary stays. A related set of policies are for conditional release from a psychiatric hospital, contingent on the use of outpatient treatments, which may create a mechanism to shorten IPF stays. (For a discussion of these policy options, see Chapter 7.)

6.3 Evidence The important policy questions about the continued need for IPFs, their costs, benefits, and intersection with other systems served by people with severe mental illness can guide efforts to improve the efficiency and equity of the US healthcare system. In the section below, we review the evidence base that addresses many of these guiding questions.

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6.3.1 Bed Utilization and Occupancy The many anecdotal reports [61, 62] of bed shortages from clinicians and mental health policy leaders strongly suggest that problems gaining access to psychiatric inpatient care are currently common in many areas of the country. However, such reports do not by themselves constitute reliable evidence of persistent structural shortages in IPF bed capacity. A careful and systematic review of available data on indicators of psychiatric bed need compared with psychiatric bed availability and community capacity may help inform judgments regarding the adequacy of current psychiatric bed capacity. Table 6.1, drawn from SAMHSA’s 2016 National Mental Health Services Survey (N-MHSS) data [16], shows the numbers of specialty psychiatric inpatient beds located in various program settings and in US Department of VA hospitals (i.e., federal hospitals). The N-MHSS data shows that as of 2016, 95.8% of all 106,486 beds designated for specialty psychiatric inpatient care were located in the following settings: general hospitals (35,395 beds, 33.2% of all psychiatric inpatient beds), state psychiatric hospitals (32,995 beds, 31.0% of all psychiatric inpatient beds), private psychiatric hospitals (30,991 beds, 29.1% of all psychiatric inpatient beds), and VA hospitals (2673 beds, 2.5% of all psychiatric inpatient beds). As we noted above in the Questions section, the bed occupancy rate is often used by healthcare systems as a benchmark of currently used versus spare hospital bed capacity. As shown in Fig. 6.3, the IPF bed occupancy rate at public psychiatric hospitals has remained comparatively stable over several decades at around 90%, whereas the occupancy rates at private psychiatric hospitals and general hospital units were around 80% in 1970, and then reached a nadir below 70% in 2000 before increasing to more than 80% in 2010 and more than 90% in 2016 [13, 16–18, 63]. In fact, for the first time in 2016, bed occupancy was over 90% within all three of the major categories of IPF providers. Consequently, overall bed occupancy in IPFs is currently high by comparison with historical benchmarks, and bed occupancy in general hospital IPFs and private psychiatric hospital IPFs has trended upward over the past decade. By comparison, the Medicare Payment Advisory Commission (MEDPAC) reports that the overall bed occupancy in all short-term “acute care” hospital beds, which includes general medical unit beds not located in IPFs as well as all IPF beds, was 62% in fiscal year 2015, a slight decline from the 64% rate observed during fiscal years 2006–2008 [64]. Consequently, overall bed occupancy in all general hospital beds is lower in

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Fig. 6.3  IPF occupancy rates (%) by hospital type, 1970–2016. Notes Authors’ calculations using information using data on end-of-year residents and 24-hour acute inpatient beds in specialty psychiatric facilities, 1970–2016 (Source CMHS [16], SAMHSA [17, 18, 63], and Lutterman et al. [13])

non-IPF medical units than in IPF-unit beds, and the overall occupancy of inpatient beds in general hospitals has not increased during the past decade. Notably, IPF bed shortages could coexist with non-IPF bed surpluses even at the same hospitals, because clinical and administrative procedures, clinical staffing requirements, and differences among insurance plans in level of coverage could discourage hospitals from placing more psychiatric inpatients in medical “scatter” beds. Unfortunately, very little evidence from prior research exists on this topic. The NASMHPD Research Institute (NRI) found in a 2015 survey of state mental health agencies that the majority of states identified shortages of acute psychiatric bed capacity [13]. However, NRI also reported that states’ responses to these shortages did not involve reopening closed state hospital beds or building new hospitals [13]. Instead, states focused on offering more community-based substitutes for inpatient care in state hospitals. These substitutes included working with general hospitals to open or reopen beds, funding residential crisis beds, funding crisis response teams, and increasing other evidence-based community-based services such as ACT and supportive housing. Thus, many bed shortages may result in a further shifting of resources from acute inpatient care to outpatient service settings and may influence hospital system leaders to more tightly manage inpatient admission and inpatient length-of-stay to allay hospitals’ need for additional beds.

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The currently high bed occupancy rate could also be related to payment system incentives. Hospitals being paid under retrospective cost-based reimbursement approaches (as existed in Medicare under TEFRA prior to 2005) have a strong financial incentive to maintain spare bed capacity, whereas hospitals paid per day of inpatient care provided have a stronger incentive to keep bed occupancy high, in order to maximize revenue generated from patient occupancy of psychiatric beds that have already been paid for and staffed. Under capitated systems and global budgets, hospitals may have a disincentive to expand the number of beds, as doing so will increase their costs but may not increase their revenues. Consequently, we can speculate that the introduction of Medicare prospective payment in 2005 and the continuing spread of capitation payment arrangements in all insurance plans may have reduced hospitals’ incentives to add new IPF beds, and also may have increased incentives for maintaining a high level of bed occupancy. Research evidence on this topic is lacking. Interpretations of what to do about high occupancy and bed shortages may also depend a lot on one’s own circumstances and preferences. Surveys show that mental healthcare consumers consistently prefer living in a community to living in an institution [65]. However, proponents of additional institutional care beds, including many providers and family members [66], would argue that reliance on the outpatient services system exposes many socially vulnerable individuals to additional safety risks and results in overburdened emergency departments [67].

6.3.2 Current Evidence of Spending on IPF Care and Financing Models Expenditures on acute IPF care have decreased over time as a percentage of overall mental health spending, down from 42% of all US mental health expenditures in 1986 to 23% in 2009 [68]. This decline was due both to the decrease in beds per capita (Fig. 6.2) as well as the rapid increase in spending on psychotropic medications, which went from 8 to 28% of mental health spending over the same period. Meanwhile, spending on psychotropic medications has increased over time both in total and as a percentage of total behavioral health spending. Figure 6.4 shows the projected trends in the use of the three major categories of psychiatric inpatient providers [68, 69]. Expenditures in both specialty hospitals and in the specialty mental health units of general hospitals are projected to decline further as components of

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IPF spending, whereas spending on scatter beds in non-IPF medical units of general hospitals is an increasing proportion of total IPF spending. The source-of-payment composition of psychiatric inpatient expenditures differs by type of IPF. Among the community-based IPFs, private commercial insurance plans are the primary source of payment for the majority of admissions [70], while state general funding accounts for at most a small percentage. Other sources include Medicare and Medicaid payments on insurance claims, and charitable sources, including both private and public sources. The public portion of charitable spending is predominantly the so-called disproportionate share payments from Medicare and Medicaid. According to a 2010 report commissioned by the US Assistant Secretary for Planning and Evaluation (ASPE), in 2007, commercial insurance and Medicaid and Medicare accounted for 78% of admissions to private psychiatric hospitals and specialty psychiatric units, whereas the remaining 22% of admissions were paid by other sources, primarily state and local governments [69]. By contrast, a full two-thirds (66%) of admissions to state psychiatric hospitals in 2007 were paid by state and local government sources, while all other sources, including Medicaid (27%), commercial insurers (4%), and Medicare (3%) accounted for only 34% of admissions [69]. This variability likely reflects the influence of financing system policies. The smaller role of Medicare and Medicaid in state institutions is a likely result of restrictions on the use of these sources to pay for institutional care. As a result of the IMD exclusion, the 27% Medicaid portion of state hospital

Fig. 6.4  Projected future trends in IPF and non-IPF general hospital spending by hospital type (Source Authors’ representation of data from ASPE, 2010 [69])

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spending may be attributable primarily to inpatient stays among individuals under age 22 or over age 64 years old. Commercial insurance plans generally do not cover inpatient stays in public psychiatric hospitals, and this accounts for their small representation among the payers of state hospital stays. Enrollment in fully capitated behavioral health models has been increasing in states’ Medicaid programs, and this also may influence the use of inpatient beds. In 2014, more than 60% of Medicaid enrollees were enrolled in a comprehensive capitated plan [71]. Research on earlier capitation models generally found substantial reductions in inpatient mental health services use over traditional fee-for-service care, and overall reductions in costs, but little effect on access to outpatient services or quality [72–74].

6.3.3 Waiting Times and Observation Stays Horror stories abound of psychiatric patients boarded in hospital emergency rooms for days on end. Recent evidence shows that psychiatric patients are almost twice as likely to experience emergency department stays of 6 h or longer than are patients with other health conditions and that their average stay was almost twice as long [60]. These longer stays are suggestive of a shortage of IPF beds [26], because of EMTALA restrictions on the ability of hospitals to release patients with unstable conditions. In addition, a study of over 1000 patients in five hospital EDs found perceived limitations on both availability of bed supply and of staffing to be associated with increased length of time in the ED [25]. Community resources, such as a regional psychiatric emergency facility have been shown to be associated with substantially shorter ED wait times [75]. A subset of ED boarding occurs within hospitals’ observation units. Hospitals increasingly bill for “observation services” awaiting a decision to admit or discharge a patient [76]. Observation units can be located in emergency departments or other units of the hospital, and stays there are meant to be short term in nature. Patients in observation status pay for their stay as an outpatient, even though they may actually be in a hospital overnight. There is yet little evidence on how the creation of hospital observation units affects or is affected by the supply of IPF beds.

6.3.4 Inpatient Bed Management Policies and Strategies The rapid spread of managed behavioral health care during the 1980s and 1990s resulted in less use of inpatient care as a result of managed care utilization review and reimbursement policies [28, 77]. Managed behavioral

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healthcare organizations achieved a reduction in inpatient admissions primarily by administratively setting clinical criteria for psychiatric inpatient admission and requiring that hospitals seek pre-authorization of insurance reimbursement prior to admission. We can speculate that the spread of managed behavioral health care likely accounts for much of the decrease in inpatient expenditures after 1990, though additional research is needed. Managed behavioral healthcare reimbursement policies are also likely responsible for a dramatic reduction in mean inpatient length-of-stay during the 1980s through the 2000s. The mean length-of-stay for psychiatric stays in US community hospitals declined by 40% during the decade between 1988 and 1997, from 13.3 days per stay in 1998 to 8.0 days per stay in 1997 [70, 78]. Mean length-of-stay for mental health and substance abuse stays in community hospitals declined further in the 2000s, reaching 6.8 days per stay during the period 2005–2010 [70]. This reduction made possible a greater overall number of inpatient stays within a given number of IPF beds. Consequently, although managed behavioral healthcare effects on quality and outcomes are still controversial, managed care has likely served to delay the need for additional psychiatric inpatient beds in IPFs. However, the extent to which utilization management and payment system incentives can achieve further reductions in psychiatric inpatient utilization is unclear. Further reductions in IPF mean lengths-of-stay may not further reduce overall inpatient utilization of IPF beds [52]. Discharging patients too early, before they are stable enough to return to the community, is likely to result in a higher rate of hospital readmission. Obtaining clear evidence of those effects is empirically challenging, however, because IPFs with greater mean lengths-of-stay may not be perfectly comparable to IPFs with lower mean lengths-of-stay. Psychiatric inpatient length-of-stay could, in fact, be correlated with difficult-to-measure factors, such as illness complexity, that are also correlated with mean IPF readmission risk. Perhaps as a result of this confounding, rigorous evidence on the effects of shorter psychiatric inpatient length-of-stay has been scarce. Increasing use of bundled payment mechanisms, where an insurer pays providers a fixed amount for each episode of illness; global budgeting initiatives, in which hospitals are prospectively assigned fixed budgets; or even penalties for readmissions, might lead to further reductions in psychiatric inpatient utilization in the United States. These payment models give hospitals a financial incentive to prevent unnecessary inpatient costs associated with unplanned readmissions to the same or to other hospitals. Under bundled payment arrangements and under global budgeting, which currently exist in Maryland, hospitals do not receive additional revenue when patients

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are readmitted to a hospital too soon after their initial date of inpatient discharge. As a result, many hospitals are exploring strategies for reducing inpatient readmissions by helping patients engage in specialty psychiatric outpatient services immediately after an inpatient discharge and by providing other transition supports, such as nurse case managers, to former inpatients during the immediate post-discharge period. Although most of these initiatives are too new to be able to tell yet whether they can reduce psychiatric inpatient admissions overall, it seems plausible that hospitals’ efforts toward reducing readmissions could further erode psychiatric inpatient utilization and consequently could erode need for psychiatric inpatient beds.

6.3.5 Impacts of Community Care Alternatives to Inpatient Beds There is a significant amount of evidence that community alternatives to inpatient hospitalization can influence use of inpatient hospital services. More than four decades of research from randomized and observational trials have estimated the effect that ACT has on reducing the use of inpatient hospital beds [79–81]. Most studies have consistently estimated that adults with severe mental illness participating in ACT have a substantial reduction in hospital utilization. The magnitude of this effect can vary based on the intensity of hospital use prior to ACT initiation, ACT team fidelity and caseload, and level of other community services available [82, 83]. A review of randomized studies of case or care management for adults with severe mental illness found that case management increased the use of inpatient hospitals over standard community care, but this was likely mediated through maintaining greater contact with the mental health system [84]. Intensive case management approaches, which can include ACT but also less intensive models, have been shown to reduce psychiatric hospitalizations [85]. Supportive housing, an approach that can create avenues for more affordable housing as well as greater linkages with services, has also been shown to reduce the need for hospitalization [86]. Crisis interventions, including mobile crisis teams that can respond to individuals with acute psychiatric crises in their homes, have also been shown to reduce the need for IPFs [87]. Outpatient commitment laws have been shown to reduce the need for hospitalizations, although this depends on a number of related factors, including the community services available, and the length and strength of enforcement orders [88]. Conditional release from the hospital

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has been examined in studies from the U.K. and Australia, which have shown similar reductions in re-hospitalization as outpatient commitment [89–91]. Other community resources that have been shown to reduce the demand for IPF services include community-based follow-up care with a mental health specialist [92], and peer support [93].

6.3.6 Effects of Recent Public Policy Reforms There is a growing evidence base on the effect of recent insurance expansions on the use of inpatient psychiatric care. Results from a study of the expansion of insurance coverage in Massachusetts, which served as a model for the ACA, found a reduction in hospital admissions for behavioral health disorders among young adults aged 19–26, although this result was primarily driven by reductions in hospitalizations for substance use disorders, and to a much lower extent, depression [94]. A subsequent analysis of national data found that the 2010 expansions of dependent care coverage to adults aged 19–25 resulted in a small increase in the use of inpatient psychiatric hospitalizations as compared to slightly older adults, who were not eligible from expanded coverage [95]. While no analysis of the effect of the ACA’s Medicaid expansion on IPF care has yet been published, prior work examining the effect of expanding access to Medicaid to adults with severe mental illness released from prison found that Medicaid enrollment did not reduce either state or local psychiatric hospitalization [96]. Parity legislation, however, appears to have had only a slight effect on IPF utilization and need. The Health Care Cost Institute examined trends in the use of IPF care in a privately insured population and found a generally increasing trend in utilization of inpatient services for mental health (6%) and substance use disorders (20%), but these trends appear to have started before MHPAEA implementation [97]. Ettner and colleagues found a small increase in the rate of IPF use after the implementation of parity among privately insured individuals, but no changes overall in the level of spending on inpatient care [98]. The size of this effect is not unexpected however; prior research found that less than 10% of privately insured enrollees were affected by the limits on inpatient days or outpatient visits that were in effect prior to MHPAEA [99]. From 2012 to 2015, the Centers for Medicare and Medicaid Services conducted a demonstration project to examine the impact of the IMD restriction [100]. Twenty-eight private IMDs across 11 states and the District of Columbia participated in this demonstration, which created

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a Medicaid funding stream for psychiatric stays in IMDs for non-elderly adults, who would otherwise have been subject to the IMD restriction. The federal evaluation of the demonstration found very little effect of the demonstration on a number of outcomes, including admissions to the participating IMDs, admissions to area general hospitals, length of stay in participating IMDs, ER visits, and ED boarding time, although the strength of these conclusions are dampened by significant limitations, including a very short follow-up period. In the five states that could be evaluated, costs to the Federal Government increased under the CMS IMD-restriction demonstration, while costs to states decreased. In the only state with an identified comparison group (California), total mental health spending increased as a result of the demonstration. In three of four other states, which utilized a pre-post design without a comparison group, costs also increased, while in one state, mental health spending decreased. The evaluation also found that speculated decreases in the use of general hospital scatter beds from releasing the IMD restriction did not occur; in fact, the use of scatter beds in general hospitals by patients in acute psychiatric crisis was relatively rare both before and during the demonstration. It is not clear at this writing whether the results from this demonstration will influence national Medicaid policy on IMDs, although CMS decided to allow Medicaid managed care plans to use capitated payments to pay for care in IMDs, effectively opting out of the IMD restriction.

6.3.7 Future Directions for Simulation Modeling Microsimulation models (MSMs) are often used to integrate disparate pieces of information into forecasts (or “projections”) that allow policy leaders to explore the likely outcomes of different policy decisions and rapidly obtain the predicted impacts of various hypothetical or “what if ” scenarios. The MSM provides a mathematical model structure into which the various relevant pieces of information are substituted, and forecasts are then made. Recently, MSMs have been receiving attention for their potential application to healthcare planning problems and decisions [101, 102]. MSMs are usually developed using one of two popular methods, AgentBased Modeling or Markov Discrete Event Simulation Models [103]. Both approaches are based on similar concepts and procedures and offer the capacity to build in dynamic effects. Discrete event models typically use a first-order Markov modeling structure and can be used to simulate mean outcomes over many contingencies and random events. This mean averaging

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approach is used to calculate the expected values of the payoffs that result from the various possible paths through the MSM at any given point and then the marginal cost-effectiveness of the different paths can be calculated. By contrast, agent-based models simulate the decision-making processes of various agents operating within a system of rules of behavior set by the simulation’s designer. Agent-based models have been used for example to study the spread and economic costs to the public of a viral epidemic under various policy scenarios [104]. The agents’ actions within the model are governed by a value function, which is used to weigh alternative options at any given point within the model. The value function may be influenced by the arrival of new information and potentially by the decisions of other agents in the model. Once constructed, either of these two approaches can provide rapid (that is, same-day) responses to queries from a policy decision-maker about the outcomes of different courses of action in response to emergent needs within the modeled system. La and colleagues developed a discrete event simulation model to explore the potential impacts of additional state psychiatric hospital beds in North Carolina on the number of days patients wait in emergency departments for a bed to become available [50]. The simulation model used patient waitlist information and inpatient utilization information from the state hospital system as well as information about bed capacity in two psychiatric units at one of three state psychiatric hospitals to model the impact of additional psychiatric beds. The model was tested and revised using data on actual inpatient utilization and waiting time to ensure the validity of its predictions. The authors then considered four different scenarios for increasing bed capacity. The four scenarios differed by the number of beds being added (24 or 48) and by whether the new beds would be distributed equally across units or whether they would be assigned differentially across units to ameliorate a more severe shortage before allocating beds to the other unit. The simulation showed that “a large number of additional state psychiatric hospital beds would be needed to make any substantial impact on the average wait time to admission,” and consequently the model implied that adding beds to state hospitals may not fully resolve concerns about emergency department boarding of psychiatric patients. The La and colleagues 2016 study is virtually unique in the psychiatric services research literature, and illustrates the potential utility of simulation models in exploring the practical implications of policy questions about changes in bed capacity within a system. Similar modeling efforts could be used to develop bed utilization models for an entire hospital system in a region, and could take into account various nuances such as the impacts on

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bed utilization of community-based outpatient supports. Simulation models could also be used to assess the impacts on psychiatric inpatient care of limited mental health provider availability. Limited availability of psychiatrists and other mental health specialists will likely continue to limit the growth of psychiatric inpatient and psychiatric outpatient services. As a result, models of inpatient service delivery should explicitly account for labor supply constraints in psychiatry and should be designed for assessing the additional personnel costs associated with bed expansions. Similarly, future simulation models could account for possible changes in public spending on supported housing options and other long-term residential options for individuals with severe mental illness who have major impairments in functioning. These models could also be extended to reflect the complex interplay between inpatient psychiatric beds located in criminal justice settings and the greater supply of community IPFs. Comprehensive simulation models should also consider flows of individuals with mental illness into and out of criminal justice systems, which serve an estimated 350,000 adults with serious mental illness who are incarcerated in prison or jail [105]. Most large prison and jail facilities have their own inpatient psychiatric unit for the segregation or treatment of the disproportionately large number of individuals with severe mental illness who are incarcerated. Temporary placement in a prison or jail may reduce demand for community-based IPF services, while releases or transfers from prisons and jails may increase demand for beds. Of greater importance, judicial and law enforcement policies regarding criminal incarceration versus psychiatric placement of persons with severe mental illness who have committed crimes are likely to have substantial effects on the need for IPF capacity.

6.4 Conclusions This chapter reviewed the myriad factors associated with developing an estimate of the optimal number of IPF beds in any community and reviewed empirical evidence of bed shortages. The need to maintain at least some number of beds in IPFs is driven by the need for a certain percentage of individuals in a given population to be kept in a safe and secure psychiatric clinical care setting for longer than 24 hours at a time. However, differing numbers of beds are needed in different types of IPFs, because to some degree different types of IPFs serve different subpopulations that have specialized needs. In addition, need for IPF beds is affected by the availability of community-based services and supports and by clinical management

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policies. Greater availability of effective outpatient programs and social supports may diminish the need for psychiatric inpatient care, as may changes in managed behavioral healthcare enrollment and managed behavioral healthcare utilization review practices. Access to different types of IPFs may also differ among individuals depending on their source of insurance coverage and their reason for needing IPF care. Restrictions on Medicare and Medicaid payments to specialty psychiatric hospitals have likely resulted in increased use of general hospital IPFs as a proportion of all IPF stays and in a decrease in use of state psychiatric hospitals. Meanwhile, state hospitals and prisons and jails have largely become the provider of last resort for involuntarily admitted patients and forensic patients whose access to other IPFs is limited, either by virtue of their behavior problems or by virtue of their lack of insurance coverage. A review of the available evidence indicates that IPF bed occupancy rates are currently at historically high levels, with bed occupancy rates over 90% on average in 2015, and that bed occupancy has increased over the past decade in specialized psychiatric units of general hospitals and in private psychiatric hospitals. Despite evidence of that at least temporary bed shortages exist in many jurisdictions, most state mental health authorities have indicated their intention to expand patients’ access to other community-based services and supports rather than to add more IPF beds. This policy response implicitly recognizes that the number beds needed in any community is a complex function of government policies, insurance coverage of inpatient services, and the effects of other community-based services and supports. There is also evidence of a shortage of psychiatrists and other mental health specialists who can prescribe psychiatric medications. This professional shortage may contribute both directly and indirectly to emergency department boarding. As a direct effect, a growing number of individuals with acute psychiatric symptoms who cannot gain timely access to a psychiatrist may seek care at an emergency department. An indirect effect of psychiatrist shortage is that fewer psychiatrists are available to staff IPF beds, and consequently the cost of hiring a psychiatrist to staff beds in IPFs might be increasing. As a result, the cost of further expanding IPF bed capacity may be increasing while the public’s support for such investments may depend on how they value institutional care versus community-based care. A new generation of simulation models could give policy leaders access to tools that will allow them to better plan inpatient bed capacity needs for individuals with severe mental illnesses. These models could incorporate the complex dynamics among community IPFs, available substitutes and

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supporting services, as well as modeling flows between the criminal justice system and the need for IPFs in local areas. Even so, such assessments may be valid only for those regions of the country and for those sectors of psychiatric care for which reliable longitudinal data on psychiatric services use are available. Generalizations of conclusions from one region or sector to other regions or sectors may be invalid, because inpatient capacities and other community-based psychiatric service-system capacities are known to vary substantially from region to region and from sector to sector. All of these nuances should be considered carefully when assessing the need for additional psychiatric beds.

Notes 1. We do not consider inpatient mental health beds in prisons or jails since they are available only to incarcerated populations. Moreover, there are no national databases that record information about the number and use of those beds. 2. SAMHSA no longer routinely collects detailed diagnosis information on residents in state psychiatric hospitals; the most recent information is from 2005.

References 1. Breakey, W. R. (1996). Inpatient services. In W. R. Breakey (Ed.), Integrated mental health services: Modern community psychiatry (pp. 264–275). New York: Oxford University Press. 2. Substance Abuse and Mental Health Services Administration. (2014). Crisis services: Effectiveness, cost-effectiveness, and funding strategies (HHS Publication No. [SMA]-14-4848). Rockville, MD: Substance Abuse and Mental Health Services Administration. Retrieved from 3. Grob, G. N. (1992). Mental health policy in America: Myths and realities. Health Affairs, 11(3), 7–22. 4. Pow, J. L., Baumeister, A. A., Hawkins, M. F., Cohen, A. S., & Garand, J. C. (2015). Deinstitutionalization of American public hospitals for the mentally ill before and after the introduction of antipsychotic medications. Harvard Review of Psychiatry, 23(3), 176–187. hrp.0000000000000046. 5. Grob, G. N. (2006). The dilemma of federal mental health policy: Radical reform or incremental change? New Brunswick, NJ: Rutgers University Press.

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52. Russakoff, L. M. (2014). Private in-patient psychiatry in the USA. Psychiatric Bulletin, 38(5), 230–235. 53. Goldman, W., McCulloch, J., & Sturm, R. (1998). Costs and use of mental health services before and after managed care. Health Affairs, 17(2), 40–52. 54. National Council for Behavioral Health. (2017). The psychiatric shortage: Causes and solutions. Washington, DC: National Council for Behavioral Health. Retrieved from uploads/2017/03/Psychiatric-Shortage_National-Council-.pdf. 55. Thomas, K., Ellis, A., Konrad, T., Holzer, C., & Morrissey, J. (2009). Countylevel estimates of mental health professional shortage in the Unites States. Psychiatric Services, 60(10), 1323–1328. 56. Domino, M. E., Lin, C. C., Morrissey, J., Ellis, A. R., Fraher, E., Gaul, K., … Thomas, K. (2016). The psychologist workforce in North Carolina: Expanding access for patients in rural areas. Chapel Hill, NC: Cecil G. Sheps Center for Health Services Research. Retrieved from http:// PsychologistWorkforceInNorthCarolina_June2016.pdf. 57. Centers for Medicare & Medicaid Services. (2017). The Mental Health Parity and Addiction Equity Act (MHPAEA). Retrieved from programs-and-initiatives/other-insurance-protections/mhpaea_factsheet.html. 58. Irvin, C. V., Denny-Brown, N., Bohl, A., Schurrer, J., Wysocki, A., Coughlin, R., & Williams, S. R. (2015). Money follows the person 2014 annual evaluation report. Cambridge, MA: Mathematica Policy Research. Retrieved from https:// money-follows-the-person-2014-annual-evaluation-report. 59. West, J. C. (2014). Emtala obligations for psychiatric patients. Journal of Healthcare Risk Management, 34(2), 5–12. jhrm.21153. 60. Nolan, J. M., Fee, C., Cooper, B. A., Rankin, S. H., & Blegen, M. A. (2015). Psychiatric boarding incidence, duration, and associated factors in United States emergency departments. Journal of Emergency Nursing, 41(1), 57–64. 61. Evans, M. (2016). Behind Medicaid’s move to pay psychiatric hospitals. Modern Healthcare, 46(7), 22–24. 62. Dickson, V. (2017). Providers feel the pain of slow Medicaid mental services rule rollout. Modern Healthcare, 47(35), 18. 63. Substance Abuse and Mental Health Services Administration. (2017). National Mental Health Services Survey (N-MHSS): 2016 data on mental health treatment facilities (BHSIS Series S-98, HHS Publication No. [SMA] 17-5049). Rockville, MD: Substance Abuse and Mental Health Services Administration. Retrieved from files/2016_National_Mental_Health_Services_Survey.pdf.

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64. Medicare Payment Advisory Commission. (2017). A data book: Health care spending and the Medicare program. Washington, DC: Medicare Payment Advisory Commission. Retrieved from 65. Tanzman, B. (1993). An overview of surveys of mental health consumers’ preferences for housing and support services. Hospital & Community Psychiatry, 44(5), 450–455. 66. Holley, H. L., Hodges, P., & Jeffers, B. (1998). Moving psychiatric patients from hospital to community: Views of patients, providers, and families. Psychiatric Services, 49(4), 513–517. 67. Brown, J. F. (2007). A survey of emergency department psychiatric services. General Hospital Psychiatry, 29(6), 475–480. genhosppsych.2007.05.003. 68. Substance Abuse and Mental Health Services Administration. (2014). Projections of national expenditures for treatment of mental and substance use disorders, 2010–2020 (HHS Publication No. SMA-14-4883). Rockville, MD: Substance Abuse and Mental Health Services Administration. Retrieved from 69. Schwalbe, L. (2010). Behavioral health providers: Expenditures, methods and sources of payment, electronic health record incentive payments for certain behavioral health providers policy descriptions. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Retrieved from 70. Slade, E. P., Goldman, H. H., Dixon, L. B., Gibbons, B., & Stuart, E. A. (2015). Assessing the representativeness of Medical Expenditure Panel Survey inpatient utilization data for individuals with psychiatric and nonpsychiatric conditions. Medical Care Research and Review, 72(6), 736–755. https://doi. org/10.1177/1077558715592745. 71. Centers for Medicare & Medicaid Services. (2016). Medicaid managed care enrollment and program characteristics, 2014. Cambridge, MA: Mathematica Policy Research. Retrieved from 72. Bloom, J., Hu, T.-W., Wallace, N., Cuffel, B., Hausman, J., Sheu, M.-L., & Scheffler, R. (2002). Mental health costs and access under alternative capitation systems in Colorado. Health Services Research, 37(2), 315–340. https:// 73. Catalano, R., Libby, A., Snowden, L., & Cuellar, A. E. (2000). The effect of capitated financing on mental health services for children and youth: The Colorado experience. American Journal of Public Health, 90(12), 1861–1865. 74. Stoner, T., Manning, W., Christianson, J., Gray, D., & Marriott, S. (1997). Expenditures for mental health services in the Utah prepaid mental health plan. Health Care Financing Review, 18(3), 73–93.

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75. Zeller, S., Calma, N., & Stone, A. (2014). Effects of a dedicated regional psychiatric emergency service on boarding of psychiatric patients in area emergency eepartments. Western Journal of Emergency Medicine, 15(1), 1–6. https:// 76. Wright, B., Jung, H.-Y., Feng, Z., & Mor, V. (2013). Trends in observation care among Medicare fee-for-service beneficiaries at critical access hospitals, 2007–2009. The Journal of Rural Health: Official Journal of the American Rural Health Association and the National Rural Health Care Association, 29(1), s1– s6. 77. Mechanic, D. (2014). More people than ever before are receiving behavioral health care in the United States, but gaps and challenges remain. Health Affairs, 33(8), 1416–1424. 78. Bao, Y., & Sturm, R. (2001). How do trends for behavioral health inpatient care differ from medical inpatient care in U.S. community hospitals? Journal of Mental Health Policy and Economics, 4(2), 55–63. 79. Burns, B. J., & Santos, A. B. (1995). Assertive community treatment: An update of randomized trials. Psychiatric Services, 46(7), 669–675. https://doi. org/10.1176/ps.46.7.669. 80. Herdelin, A. C., & Scott, D. (1999). Experimental studies of the Program of Assertive Community Treatment (PACT): A meta-analysis. Journal of Disability Policy Studies, 10(1), 53–89. https://doi. org/10.1177/104420739901000105. 81. Marshall, M., & Lockwood, A. (2000). Assertive community treatment for people with severe mental disorders. Cochrane Database of Systematic Reviews (2), CD001089. 82. Latimer, E. A. (1999). Economic impacts of assertive community treatment: A review of the literature. Canadian Journal of Psychiatry, 44(5), 443–454. 83. Morrissey, J. P., Domino, M. E., & Cuddeback, G. S. (2013). Assessing the effectiveness of recovery-oriented ACT in reducing state psychiatric hospital use. Psychiatric Services, 64(4), 303–311. ps.201200095. 84. Marshall, M., Gray, A., Lockwood, A., & Green, R. (2000). Case management for people with severe mental disorders. Cochrane Database of Systematic Reviews (2), CD000050. 85. Dieterich, M., Irving, C. B., Park, B., & Marshall, M. (2010). Intensive case management for severe mental illness. Cochrane Database of Systematic Reviews (10), CD007906. 86. Rog, D., Marshall, T., Dougherty, R. H., George, P., Daniels, A. S., Ghose, S. S., & Delphin-Rittmon, M. E. (2014). Permanent supportive housing: Assessing the evidence. Psychiatric Services, 65(3), 287–294. https://doi. org/10.1176/

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7 Mandated Community Treatment in Services for Persons with Mental Illness Marvin S. Swartz and Jeffrey W. Swanson

7.1 Framing the Issue This chapter sets forth a conceptual framework of legal and policy tools to address the challenge of treatment nonadherence in people with serious mental illnesses in a way that balances public health and safety concerns with the rights of individuals to make their own decisions regarding health care. Specifically, the application of legal and policy tools deriving from the authority of police powers, civil courts, criminal justice, and social welfare systems to “mandate” or “leverage” treatment participation among ­seriously mentally ill individuals is examined in the light of research evidence about the effectiveness and perceived fairness of such mandates in the lives of affected individuals. We also examine whether these outcomes comport with four ethical principles discussed by Beauchamp and Childress [1]: (1) respect for autonomy, (2) non-maleficence, (3) beneficence, and (4) justice. We explore opposing arguments in the continuing policy debate over mandated treatment in outpatient settings, of particular relevance in the post-institutional era of mental health service delivery. On one side are civil libertarian legal advocates and vocal representatives of mental health advocacy groups who portray any form of involuntary treatment in the community M. S. Swartz (*) · J. W. Swanson  Division of Social and Community Psychiatry, Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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as an infringement on constitutionally protected personal freedom. On the extreme of the other side, some advocates for involuntary outpatient commitment (OPC, also termed “assisted outpatient treatment [AOT]”) point to rare acts of violence committed by people with untreated psychoses as a justification that such individuals should be forced to comply with treatment. Does mandated treatment actually work? Is it too coercive? We consider the evidence from a body of research studies, the controversy over the evidence and its meaning, and the lingering methodological challenges of answering the “effectiveness question” empirically. We argue that court-mandated treatment can help some individuals adhere to a beneficial regimen of psychiatric treatment, and may also influence the mental health service system by getting clinicians more invested in outreach, in mobilizing resources and in leveraging more services on behalf of patients under these mandates. Admittedly, mandated treatment presents thorny policy dilemmas. Policy decisions about benefits and quality of life involve subjective evaluation. Which is worse: a year under court-ordered treatment or a week in the hospital or ten days in jail and probation for a minor crime? Worse for whom? Who decides this? And with whose money? Answering these questions for different states and local jurisdictions, with different kinds of populations and services delivery challenges, is a difficult task but one worth exploring.

7.1.1 The Historical Context of OPC Mandatory outpatient treatment for civil (not criminally accused) psychiatric patients began in the United States as a form of conditional release from involuntary hospitalization and as an extension of states’ involuntary commitment authority beyond the hospital into the less-restrictive setting of community-based care [2]. The specific practice of civil court-ordered psychiatric treatment in the community for adults with serious mental illnesses first emerged under the rubric of “involuntary outpatient civil commitment” following widespread deinstitutionalization in the latter decades of the Twentieth Century [3–5]. With the passage of New York’s OPC statute in 1999, the practice became commonly known as “assisted outpatient treatment” in the United States, a term that some regard as a euphemism [6], and “community treatment orders” (CTOs) in several other countries to which it has spread, including the U.K., Canada, and Australia [7, 8]. The earliest OPC statutes only applied to people who already met criteria for involuntary hospitalization, largely people with mental illness deemed to be “dangerous to self or others” [9–11]. In effect, this meant that there were two types of OPC. The first type occurred as part of an involuntary

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hospitalization; the patient so-committed could be court-ordered to community treatment as a “step-down” disposition after hospitalization. In many ways, this type of OPC was similar to related forms of conditional release from involuntary hospitalization. In such regimes, the patient is on a “trial visit” in the community and can be re-hospitalized if needed. The second type could occur on the front end of a commitment as an alternative to hospitalization. The candidate for OPC was, in either case, someone who could have been confined to a hospital and OPC represented a less restrictive alternative to a hospital stay or a longer period of confinement. Because these forms of OPC offered less restrictive treatment they encountered little opposition from civil liberties advocates. However some clinicians, voicing liability concerns, balked at assigning a patient deemed eligible for inpatient status to OPC [9–11]. In 1983, North Carolina enacted a “preventive” form of OPC, which became the prototype for the much more controversial “assisted outpatient treatment” laws that were later enacted in other states [10]. Most controversially, several such statutes were named after victims of violence by persons with mental illness in an effort to garner public support—most famously “Kendra’s Law” in New York and “Laura’s Law” in California [12]. Under such a preventive OPC law, a person with mental illness who is not currently dangerous, and therefore not committable to a hospital, could be ordered to community treatment on the basis of the risk of relapse. Such criteria included: (1) that the patient’s illness, by its nature, impairs his or her ability to comply voluntarily with recommended treatment such that the patient would be unlikely to remain in treatment if left unsupervised; (2) that the patient’s mental condition would deteriorate if left untreated; and (3) that the patient’s deteriorating condition would eventually result in dangerousness to self or others if left unchecked. In practice, the large majority of OPC orders are initiated in a hospital as a discharge disposition for patients who have been involuntarily committed. In New York, more than 80% of AOT orders were initiated for hospitalized patients, and only 15% were initiated de novo in the community as preventive commitment orders [13]. New York State in 1999 enacted a preventive OPC program that first introduced the contested “AOT” moniker and was also officially named “Kendra’s Law” as a memorial to Kendra Webdale, a young woman who had been pushed into the path of an oncoming subway train by a man with schizophrenia. New York’s AOT law spawned what would become the nation’s most substantially funded, widely implemented, extensively studied, and best-known program of mandated community

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mental health treatment [13]. It was this new, expanded form of OPC that also became the focus of a bitter, long-running debate over the use of legal coercion in community-based mental health care. Indeed, the debate continues to the present on the question of whether OPC might be the key to “fix the broken mental healthcare system” or whether, on the contrary, a policy so narrowly focused on “treatment noncompliance” and the use of individual court orders might actually be part of the problem [12].

7.1.2 Assumptions Underlying OPC A set of assumptions drive the adoption of OPC in the United States. First, it is assumed that the revolving-door syndrome represents a failure to engage high-need psychiatric patients in mental health services appropriately attuned to their needs. It is assumed that such treatment and services offer the best chance of reducing relapse, and that without assertive outreach and a comprehensive array of services, these patients are at high risk of deteriorating to the point of dangerousness [14, 15]. Second, it is assumed that many such patients lack awareness or insight into the need for treatment and would fail to voluntarily seek such services—either in refusing the services or because a strained public mental health care system would simply fail to make their care its highest priority. Finally, it is assumed, that the “moral authority” of the court, or “black robe effect” embodied in court-ordered treatment, exerts pressure on the patient and family to comply with treatment, while simultaneously pressuring accountable providers to deliver needed services [16]. In this formulation, the moral authority of the court persuades the patient to adhere to treatment long enough to benefit from services leveraged by the court order. Employing this court authority, it is hoped that the patient will regain the autonomy and insight previously lost to the illness. For those unlikely to regain insight, an open-ended regimen of court-ordered treatment or guardianship might be required. Under involuntary outpatient civil commitment, a civil court directs a person with severe mental illness to adhere to a treatment plan with the intent of preventing relapse [17–20]. Typically, noncompliance with the court order involves police officers or sheriff’s deputies transporting such a patient to a treatment facility for re-evaluation and efforts to encourage compliance with the treatment plan, but enforcement does not permit forced medication which some see as a serious limitation to the effectiveness of such laws [20]. While outpatient laws are permitted in statute in all

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but a few US jurisdictions, the practice has been inconsistently implemented [21–24]. A five-state study of the prevalence of leveraged community treatment found that 12–20% of persons with serious mental illnesses who were receiving services in public behavioral health systems reported a history of OPC [25]. However, a recent initiative by the Substance Abuse and Mental Health Services Administration (SAMHSA) encouraging implementation of new OPC programs may increase use of these programs [26]. It should be noted that OPC operates in the context of a variety of other treatment mandates initiated with the similar goal of applying leverage to improve treatment adherence [18]. People with severe mental illness who are poorly adherent to treatment frequently interact with the social welfare and justice systems. The “leverage” that is applied by these systems has the goal of improved adherence with community treatment. From this perspective, OPC is just one of such mandates that attempts to leverage release from hospital, avoidance of a criminal sanction, or access to resources such as money or housing in an effort to gain treatment adherence. For example, mandated treatment in the social welfare system may involve access to subsidized housing made contingent on participation in needed treatment [18]. Similarly, leverage may be employed with receipt of social welfare benefits. Recipients of Supplemental Security Income or Social Security Disability Insurance are sometimes assigned a representative payee appointed to receive and manage their checks. A representative payee is usually appointed for people who have schizophrenia, people with a co-occurring substance use disorder, those with a history of mishandling money, or homeless persons [27, 28]. The assigned representative payees are usually family members, but organizations may also serve this function, particularly where no family member is available [29]. Representative payees may make receipt of some funds contingent on treatment participation. Representative payee programs have been found to reduce the number of hospital days [30], to increase adherence to outpatient treatment and to decrease homelessness [31]. A study that surveyed representative payee programs of mental health centers in Illinois found that disbursement was at least moderately contingent on adherence to mental health treatment in 55% of the programs and tightly linked in 17% of programs [32]. Thus, it appears that leveraged disbursement of disability benefits to people who have a mental illness through a representative payee is used with some frequency and, for some, this relationship approaches a mandate to participate in treatment. In another example, some agencies that manage housing programs for people with mental illness link tenancy with treatment participation [33]. While it is not clear how widespread housing is used as

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leverage it is clear it is sometimes to ensure adherence to mental health treatment in the community. Use of treatment mandates is also widespread in the criminal justice system—distinct from the civil court OPC process—wherein people who have severe mental illness and are charged with crimes are ordered by judges or court personnel to comply with treatment, with the implicit threat of heavier criminal sanctions for noncompliance. These informal procedures have long existed for dealing with mentally ill defendants who are charged with minor crimes [34]. More recently, mental health courts and other specialty courts have evolved to make explicit the link between criminal sanctions and treatment in the community. These courts were adapted from the drug court model based on the construct of “therapeutic jurisprudence” [35, 36], wherein the judge plays a therapeutically oriented role in encouraging treatment [35, 37, 38]. In a mental health court, cases are staffed by a specialized team of legal and mental health professionals where avoidance of jail is used to leverage treatment participation. Mental health courts are being established in an increasing number of communities and seem to attract a large caseload of defendants with mental disorders who, when given the choice, prefer to receive mental health treatment in the community rather than be incarcerated. In an effort to assess the frequency of the use of such mandates among persons with severe mental illness, the MacArthur Foundation Research Network on Mandated Treatment surveyed psychiatric outpatients in five public mental health treatment sites across the United States [38]. Each patient’s lifetime experience of four specific forms of leverage—money, housing, the criminal sanction, and OPC—were assessed. The percentage of patients experiencing at least one form of leverage varied between 44 and 59% across sites. Experience with OPC varied between 12 and 20%; some form of criminal justice leverage, such as mental health court varied between 15 and 30%; some leverage of money contingent on treatment participation varied 7–18%; and housing contingent on treatment varied between 23 and 40%. Attempts to use such treatment mandates were experienced more frequently among patients with more severe, disabling, and longer lasting psychopathology, a pattern of multiple hospital readmissions, and intensive outpatient service utilization. Thus, while controversies about the presumed coerciveness of OPC have focused attention on its use, other forms of coercive mandates are commonly used in attempts to improve treatment adherence in this population.

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7.2 Questions A lot has been written about OPC under its various designations in diverse literatures and countries of origin. Navigating this literature is a formidable task. Here, both for guidance and as introduction to evidence considerations, we identify several of the core questions surrounding OPC.

7.2.1 What Are the Arguments for and Against OPC? Opponents of OPC have offered legal, ethical, therapeutic, policy-based, and political arguments against the practice. Key to the legal challenges to OPC are the claims of unconstitutional infringement on “due process” and people’s liberty and privacy [23, 24, 39, 40]. The ethical arguments find it unfair and coercive [23, 24, 41, 42]. The therapeutic arguments posit that it hinders the development of a working alliance and alienates or even frightens people away from needed mental health services [42–44]. The policy arguments claim that OPC programs have not appreciably improved outcomes for people with serious mental illness in the community [45]. Finally, political arguments against OPC claim it provides an ineffectual “bandaid” that allows policy makers to continue to underfund mental health services [24, 45, 46]. Many of these arguments go to the heart of debates over the evidence for the effectiveness, coerciveness, and cost of OPC. The primary challenge to the constitutionality of OPC came in the New York Court of Appeals in 2004. Plaintiffs asserted that preventive OPC violated the right to due process and equal protection, in that the statute mandated treatment ‘‘without a showing by clear and convincing evidence that the person to whom the order applies lacks the capacity to make a reasoned treatment decision” [47]. The Court of Appeals rejected that argument and held that the state has a compelling interest in ensuring treatment is provided to patients at risk of becoming dangerous to themselves or others. Court of Appeals Judge Judith Kaye wrote: “Kendra’s Law provides the means by which society does not have to sit idly by and watch the cycle of decompensation, dangerousness, and hospitalization continually repeat itself ’’ [47]. E. Fuller Torrey, a vigorous defender of OPC and advocate for reform of involuntary commitment laws, often draws an analogy between serious mental illness and cognitive disorders such as Alzheimer’s Disease. He argues that just as we would not let persons with dementia who, by dint of the illness, lack awareness of their condition, go without care, such neglect of

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the needs of people with serious mental illness, lacking similar awareness, is equally inhumane and disrespectful [48]. While Torrey’s point is well taken, the approach often taken for such persons is a legal adjudication of incompetency and appointment of a guardian (see discussion below on alternative approaches to OPC). Legal scholars such as Bruce Winick have asserted that courts may play an appropriate therapeutic role by mandating treatment and exemplifying the principle of “therapeutic jurisprudence” [17]. In this vein, court-ordered treatment, with judicial oversight, could start people on a path that would lead them to engage collaboratively with their providers, recover and realize greater autonomy. Proponents of OPC were invigorated by empirical evidence of effectiveness of these programs. For example, in the late 1990s the first randomized controlled trial (RCT) of OPC reported that OPC could significantly reduce hospitalizations, violence, and arrests when sustained for a long enough period of time. Investigators also reported improved subjective quality of life and saved money for public systems—with little evidence of negative responses to coercion by recipients [49–55]. However, opponents of OPC pointed to methodological limitations of this trial in questioning the effectiveness of OPC (more below under Evidence). For some proponents of OPC, the linchpin of their advocacy argument is public safety—that is, by mandating treatment of the many untreated mentally ill persons visible on urban streets, OPC would make communities safer. In New York, “Kendra’s Law” memorialized the victim of a fatal attack by a person with schizophrenia and represented the first test of this public safety advocacy. Kendra’s law was followed by Laura’s Law in 2001, named for Laura Wilcox, who was shot by a patient in a mental health clinic in California. Laura’s Law was followed by Kevin’s Law, named for Kevin Heisinger, another victim in Michigan in 2000 [56]. The public outcry over mass shootings by apparently mentally ill individuals at Virginia Tech, Sandy Hook, Tucson, Arizona, Aurora, Colorado, Santa Barbara, California, Parkland, Florida and elsewhere has added new fuel to the public safety argument for OPC, but also countervailing concern about stigma arising from the public misconception that people with mental illness are violent [56]. In an effort to expand OPC programs and refocus federal mental health programs on severe mental illness, former Congressman Tim Murphy (R-PA) sponsored the “Helping Families in Mental Health Crisis Act,” which was particularly explicit in linking violence and mental illness and proposing OPC as a remedy. In the face of stiff opposition from key mental health advocacy groups, a softened bill

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encouraging states to provide access to OPC was eventually incorporated into the twenty-first Century Cures Act of 2016 [57]. [For further discussion of gun violence and its links to mental illness, see Chapter 20.]

7.2.2 What Are the Ethical Justifications for OPC? A key feature of the public debate about OPC programs and other forms of mandated treatment is their ethical justifications. Broadly, there are two perspectives on such mandates: a utilitarian vs. a deontological perspective. In the utilitarian perspective the primary focus is on whether the ends justify the means. This gives priority to a range of outcomes under OPC—such as reduced time in hospital or confinement, community integration, clinical status, and safety—as valued from the perspectives of different stakeholders—patients, families, clinicians, policy makers. In order to evaluate whether these outcomes are sufficiently beneficial to justify OPC as the means of achieving them, the utilitarian framework also concerns itself with the means by which such outcomes are achieved—the cost of treatment and other services required, the coerciveness of the procedure, and potential diversion of resources from one population to another [23]. Such perspectives are amenable to empirical analyses, allowing measurement of relevant inputs, outputs, and outcomes. The subjective preferences of different stakeholders regarding the trade-offs inherent in an ends vs. means analysis may also be measured and weighed in the balance. In contrast, the deontological approach to evaluating OPC is concerned primarily with the question of whether the practice is “right” or “wrong” as measured by objective ethical principles [23, 41]. If, for example, OPC is rejected because it is coercive prima facie and coercion is defined as harmful to people and therefore wrong, then even the ostensibly positive gains under mandated treatment would be ethically suspect. An analogy may be made to ethical debates about the death penalty. Utilitarians might reference data about whether the death penalty is effective in reducing crime. Deontologists would argue that such data are largely irrelevant if they regard the death penalty as morally repugnant under any conditions. Bioethicists Beauchamp and Childress offer a complementary framework for analysis of such ethical concerns [1, 23]. Their framework focuses on four main ethical principles: one, respect for autonomy (respecting the free choice of autonomous persons); two, non-maleficence (avoiding harm); three, beneficence (providing benefits while balancing benefits against risks); and four, justice (maintaining fairness in the distribution of benefits, burdens, and risks). Each principle offers different points of ethical analysis of OPC.

180     M. S. Swartz and J. W. Swanson To What Extent Do OPC Programs Interfere with the Autonomy of Persons Under Commitment? Opponents of OPC argue that the free exercise of autonomy, including choice of and whether to accept treatment, is the cornerstone of the therapeutic process. Autonomous choice is typically only overridden under a state’s police powers to prevent harm or under the state’s parens patriae authority when a person cannot care for him or herself. According to this argument, unless persons under OPC are a danger to themselves or others, or cannot care for themselves, there is no basis to override their autonomy and force them to receive treatment. Thus, preventive forms of OPC, aimed at averting potential future dangerousness or inability to care for self, would not be justified. One rebuttal to this argument is that OPC programs may impinge on autonomy in the short term, but actually promote autonomy long term: many people who are eligible for OPC will respond to treatment and thereby regain autonomy otherwise limited by mental illness. Because providing treatment in the community is less restrictive than administering treatment in the inpatient setting, OPC is also seen as a less restrictive alternative to hospital-based care. Further, many argue that a person may lack autonomy by dint of a severe mental illness itself, with thoughts and actions controlled by delusional or incoherent thinking. In this sense, effective treatment, even without choice may still restore autonomy. Such arguments rest on claims that OPC itself can be effective. There may be some people who have the capacity to exercise “rational” choice, but remain at risk of dangerous relapse and could remain eligible for OPC. But in such a case, OPC could not be justified solely on the basis that it restores autonomy, but that it prevents harm. Arguably, autonomous persons can make decisions to harm themselves or others and for such individuals OPC is justified by the principle of non-maleficence. Do OPC Programs Heed the Call to “Do No Harm”? Critics of OPC argue that, in practice, it engenders fear of being placed under court sanctions and that such fear will discourage patients from voluntarily seeking services for fear of being committed. Finally, although based on a misunderstanding of existing law, some fear OPC permits forcible administration of medications. It is unclear whether such fears do have an appreciable chilling effect on help-seeking. Findings from the 2011 National Survey on Drug Use and Health indicated that only 7% of individuals who

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failed to receive services when needed avoided treatment for fear of involuntary treatment [58]. Answering the question of whether OPC programs avoid doing harm also requires assessing the subjective appraisal of similar programs by all those affected by them, including the general public. Such appraisals [59] include patient perceptions of coercion and benefit [60, 61], as well as quality-of-life indicators that go beyond clinical outcomes [53]. Can OPC Programs Promote Beneficence While Balancing Benefits and Risks? OPC may infringe upon a person’s right to privacy. At the same time, OPC may produce benefits, including reduced hospitalization, the ability to live productively in the community, and to exercise more autonomous decision-making; this could counterbalance or outweigh the drawbacks of OPC and provide more privacy in the long term. Evaluating the effectiveness of an OPC program is key to determining whether the benefits that are promised are being provided to those persons whose rights to refusal and confidentiality are overridden. Are OPC Programs Just? Here, the concern is whether their benefits, burdens, and risks are distributed fairly. Some opponents of OPC argue it is inherently unjust because it prioritizes treatment for one affected population over another. For example, the group of individuals placed on court-ordered treatment receives priority over other persons who are seeking treatment and possibly cannot get it [62]. On the other hand, some argue that it is unfair for some to forego treatment when their choice results in higher public costs borne by everyone, also making voluntary treatment out of reach for those who seek it [62]. The issue of racial disparities in the application of OPC, as claimed in the New York OPC program, raises several additional concerns about equal justice [63]. Swanson and colleagues demonstrated that the racial characteristics of those selected for OPC largely reflected those eligible for the program. They also argue that how one interprets potential disparities is a function of one’s prior views on the benefits of OPC. For those who view any form of involuntary treatment as anathema, high rates of OPC among

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any disenfranchised group would clearly be unjust. But for those who see OPC as a less restrictive alternative to inpatient commitment or a route to gain priority in services for that disenfranchised group, the practice could well be just. An apparent racial disparity could be a good thing in this latter view. Research on evaluating whether OPC programs are just and equitable will need to consider the various perspectives on the nature of justice in order to make progress in settling these issues. Evaluating the effectiveness of these programs will also be required in order to determine whether they are achieving the various ideals of justice that are central to these ethical debates.

7.2.3 Are There Alternative Approaches to OPC? Given the controversies about OPC, several authors have proposed alternative approaches to mandated treatment based on a finding of decisional incapacity [64, 65]. For example, Szmukler argues that in the physical health realm lack of consent or treatment refusal is typically addressed by a finding of decisional incapacity and appointment of a proxy decision-maker [64]. In such a scenario, a court finds that the individual meets statutory criteria for incapacity (such as the inability to communicate or make healthcare decisions) and orders treatment directly or appoints a proxy decision-maker. They argue that using this approach would unify legal approaches to non-consensual treatment in physical and mental health and destigmatize the mental health approach that heavily relies on involuntary commitment. In the most sweeping application of this approach, dangerousness would no longer be grounds for involuntary commitment absent a finding of incapacity. While such an approach has some appeal it does not address the management of individuals who are dangerous to self or others but do not cross the legal threshold of incapacity. In addition, patients whose thinking is affected by denial of illness or delusions might not meet criteria for incapacity. A similar statutory approach is embodied in the concept of psychiatric advance directives [66–71]. Beginning in the late 1990s mental health advocates proposed PADs as a potential alternative to involuntary commitment. Such legislation, similar to medical advance directives, authorizes the creation of legal documents that enable persons with mental disorders, while competent, to prepare advance instructions for treatment and authorizes a healthcare agent or proxy to speak for him/her—thus avoiding legal involuntary intervention during times when he/she loses the ability to make or communicate treatment decisions. For patients who have had experiences

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with incapacitating mental health crises and recover sufficiently to be able make cogent plans to avert or manage a future crisis such an approach is appealing. Under these schemes, when a clinician determines the patient to be incapacitated it triggers the authority of the advance instructions and empowers the proxy decision-maker. In most of the 27 states now that have passed such legislation the PAD cannot be revoked during a period of incapacity and the PAD is binding—for example, authorizing admission to a hospital even when the incapacitated patient nominally might refuse to consent to admission [71]. Research has shown that persons who complete a PAD experience significant improvement in working alliance with their clinicians, fewer coercive crisis interventions, better correspondence between preferred and prescribed medications over time, and increased perception that their personal needs for mental health services are being met [67, 68, 71]. Other studies have found that clinicians and family members of persons with serious mental illness largely endorse PADs in concept [68–70]. A MacArthur-funded study in five US cities (N = 1011) queried a sample of patients with severe mental illness about their knowledge and interests in PADs [69]. The study found roughly two-thirds of the sample would be interested in completing a PAD if given assistance, but only between 4 and 13% had actually completed one. As such, the study documented a large latent, unfilled, demand for PADs among outpatients in public psychiatric clinics [70]. While there is interest in PADs as a mechanism to reduce use of involuntary commitment, barriers to their implementation have impeded the realization of their promise and uptake by providers and health systems. PADs are difficult to complete without assistance and resources to provide assistance have not been widespread. Further, national efforts to systematically implement the laws have not yet materialized.

7.3 Evidence How effective is OPC? There have been multiple observational, quasi-experimental and randomized controlled studies of the effectiveness of OPC [12, 18, 20, 46, 72, 73]. On the whole, we believe that research to date does provide evidence that OPC can be effective in reducing recidivism and improving other outcomes [12, 72] under the right conditions (more below). But, there are inconsistencies across studies and controversies among observers about how the findings should be properly assessed [46, 73]. Much of the controversy turns on whether evidence from RCTs is superior to evidence

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obtained from non-randomized, quasi-experimental designs with statistical adjustments for overcoming threats to internal validity. Many scholars consider RCTs the highest standard for evaluating the effectiveness of OPC, in part because non-randomized studies often have methodological limitations including limited comparability of committed and non-committed observed groups, variability of outcome measures across studies, the limited use of controls, and potential for selection bias [12].

7.3.1 Randomized Control Trials of OPC The first RCT of OPC was the Duke Mental Health Study conducted in North Carolina in the mid-1990s [10–12, 49]. The study enrolled patients with severe mental illness involuntarily admitted to a state psychiatric hospital or one of three general hospital psychiatric units who were eligible for OPC. They were randomly assigned to either an intervention condition consisting of OPC combined with case management when released or a control condition consisting of discharge without OPC but with the same case management services in the community as the intervention group. Both groups were also eligible to seek out routine outpatient services from local community mental health programs following hospitalization. Patients with a recent history of serious violence being discharged on OPC were placed in a non-randomized comparison group due to clinician concerns about randomizing patients with high violence risk [49]. Results showed that the study groups did not significantly differ on the overall proportion with any hospital admission during the year [49]. However, in multivariable repeated measures analyses controlling for potential confounders, the group that was randomly assigned to OPC had a 36% lower risk of re-hospitalization in any given month than the control group did (odds ratio = 0.64, 95% CI = 0.46–0.88, p ≤ 0.01). To explain these contradictory findings, the authors argued that the repeated measures findings relied on enhanced statistical power to detect reductions in re-hospitalizations compared to the analyses of the proportion with any hospital admission. Participants in the experimental group varied widely in the length of time they spent under OPC. Indeed, some of them experienced a very brief period of mandated treatment—only a few weeks—with no renewal of the court order. Thus, the study had to take into account a key source of variation in experimental exposure that could have affected outcomes but was not amenable to randomization. To address this issue, the

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authors conducted post hoc analyses examining outcomes associated with variable lengths of time under mandated treatment [49]. These additional analyses showed that patients under OPC for 180 days or more had 57% fewer admissions and 20 fewer hospital days over the study period compared to controls. Sustained outpatient commitment (OPC for 180 days or more) was most strongly associated with better outcomes when combined with frequent outpatient services. Patients under sustained OPC also were more adherent with treatment, were less likely to be victimized, had reduced family strain and improved subjective quality of life [56, 72]. However, critics of this study have maintained that these time-on-OPC analyses are susceptible to selection bias because they were based only on the subset of participants who clinicians and the courts believed would benefit from OPC extensions, not on all participants randomized to OPC. As such, it is not clear whether sustained time on OPC caused improved adherence to treatment or if those who received extended time under OPC orders were selected because of their better adherence. However, the authors presented evidence that more poorly adherent subjects were selected for longer periods of OPC: “…results demonstrating lower hospital use among subjects with longer periods of commitment could be subject to post-randomization selection bias. Hypothetically, it is possible that more tractable subjects were selected for longer periods of OPC. In fact, multivariable analyses that predicted total days of OPC among experimental subjects revealed that less tractable subjects—those with lower insight and lower medication adherence at baseline—received longer periods of OPC [49].” Despite this, the potential for selection biases led critics of OPC to conclude that the results of this study fall short of a definitive determination that OPC is effective [12, 24, 46, 73]. A RCT of mandatory OPC in New York City in 1994 was conducted at Bellevue Hospital as a pilot for a potential statewide statute for patients with severe mental illness [74]. Inpatients were randomly assigned to receive intensive community treatment with OPC or intensive community treatment alone during an 11-month follow-up period. This study found no statistically significant differences between the OPC and control groups in rates of re-hospitalization or in the number of days hospitalized during the study period. However, both groups experienced significantly fewer re-hospitalizations during the study period than during the year preceding the study. These positive outcomes were attributed to the mobilization of resources in the form of intensive outpatient services including case management

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and assertive community treatment which both groups benefitted from. The court order in itself did not seem to produce better patient outcomes. Limitations of the pilot study included lack of sanctions for nonadherence during the pilot and the study’s small sample size. Despite these negative findings of effectiveness, in 1999 the New York State legislature enacted a statewide OPC statute that renamed the program “assisted outpatient commitment”. In this program, treatment could be court mandated in a preventive form at a lower threshold than for inpatient commitment [39]. An evaluation of this program by the New York State Office of Mental Health in 2005 [39] found an 89% increase in use of case management services among AOT recipients, and substantial increases in the use of substance use disorder treatment and housing support services. Significant improvements in functioning and a decline in the incidence of harmful behaviors were also noted. A third randomized trial of OPC, the Oxford Community Treatment Order Evaluation Trial (OCTET), was conducted in the United Kingdom [75]. Patients who were involuntarily hospitalized were randomly assigned at discharge either to be released on a CTO (U.K. equivalent of OPC) or to be released on a form of conditional release authorized under Sect. 17 of the U.K.’s 1983 Mental Health Act. Hospital readmission during the 12-month follow-up period was the primary outcome of interest. Secondary outcomes included length of time to the first readmission, number of readmissions, total amount of time spent in hospital, clinical functioning, and social functioning. No significant differences were found across any of the outcomes at the 12-month follow-up [75]. Though this trial provided evidence of the lack of benefit of OPC, critics of this study suggest the OCTET lacked a true “voluntary” treatment arm for comparison [12, 24].

7.3.2 Quasi-Experimental Evaluations of OPC Researchers from Duke University, Policy Research Associates, Inc. and the MacArthur Research Network on Mandated Community Treatment conducted an evaluation of the New York AOT program in 2009 [39]. This was a retrospective quasi-experimental study that relied upon Medicaid claims and administrative data from other sources to track the utilization experiences of participants on AOT with control participants over a several year period. Evaluation results found that the likelihood of psychiatric hospital admission was significantly reduced by approximately 25% between AOT and controls during the initial 6-month court order and by over one-third

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during a subsequent 6-month renewal period compared to hospitalization records before initiation of the court order [39]. Overall patients with AOT had multiple improved outcomes: reduced hospitalization, reduced length of stay in the hospital, and increased compliance with medication and intensive case management services. While the study employed a rigorous quasi-experimental, pre-post design, propensity score adjustments, and a large sample size of several thousand subjects, critics of the study argued that a randomized trial would have provided a more rigorous test of the effectiveness of AOT [12, 24]. But defenders of such quasi-experimental approaches argue that randomized trials often limit the generalizability of their findings by setting inclusion and exclusion criteria that may not represent the realworld conditions under which such programs are implemented [12]. A follow-up cost analysis of the New York program was conducted using observational data from AOT group and voluntary recipients of intensive community-based treatment in New York City and 5 counties elsewhere in New York State [21]. Studies reported that in the New York City AOT group, net costs declined 43% in the first year after AOT began and an additional 13% in the second year. In the 5-county AOT group, costs declined 49% in the first year and an additional 27% in the second year. Though declines in cost were associated with both AOT and voluntary participation in intensive services, the AOT-related cost declines were about twice as much as those seen for voluntary services indicating that though AOT requires a substantial investment of state resources it can reduce overall service costs for individuals with serious mental illness [21]. Segal and collaborators conducted similar population-based quasi-experimental evaluations of CTOs in Victoria, Australia [76, 77]. Their sample included 11,424 patients placed on CTOs between 2000 and 2010 compared to a cohort not assigned to CTOs. The investigators controlled for need for treatment and used multiple regression statistical approaches to assess savings in hospital days attributable to CTO placement. They found that the CTO cohort’s need for treatment exceeded that of the non-CTO cohort, particularly in areas indicating potential dangerous behavior. Compared to patients not placed on a CTO, the mean duration of an inpatient episode was 4.6 days shorter for the CTO cohort than for the nonCTO cohort, and the investigators attributed a reduction of 10.4 days per inpatient episode to each CTO placement [75]. They also found CTO placement was associated with lower mortality risk and with modest enhancement of quality of life [76].

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7.3.3 Sorting Out Findings and Controversies After several generations of studies, evaluations, legislative, and systematic reviews of the evidence for involuntary OPC, there is no clear consensus in the field about its overall effectiveness across different jurisdictions, including a recent Cochrane review [46]. The Agency for Healthcare Research and Quality reviewed 64 studies that assessed strategies to reduce psychiatric readmission [78]. Most of these studies addressed three interventions: case management, involuntary OPC or CTOs, and assertive community treatment. There was no consensus as to which of these strategies worked best and outcome measurement and implementation of these strategies varied greatly. Overall better outcomes depended on effective implementation of these strategies [78]. In a 2015 Position Statement [79] and Resource Document [72] on Involuntary OPC the American Psychiatric Association found that OPC programs are difficult to evaluate by the usual approaches to comparative effectiveness research because such programs are complex community-based interventions whose effectiveness varies depending on context and implementation approach [72]. However, in evaluating the overall evidence of OPC the APA Position Statement concluded: “Involuntary outpatient commitment programs have demonstrated their effectiveness when systematically implemented, linked to intensive outpatient services and prescribed for extended periods of time. Based on empirical findings and on accumulating clinical experience, involuntary outpatient commitment can be a useful tool in the effort to treat patients with severe mental illness with clinical histories of relapse and re-hospitalization. It is important to emphasize, however, that all programs of involuntary outpatient commitment must include these elements of well-planned and executed implementation, intensive, individualized services, and sustained periods of outpatient commitment to be effective. There is also clear evidence that involuntary outpatient commitment programs help focus the attention and effort of the providers on the treatment needs of the patients subject to involuntary outpatient commitment [79].”

7.4 Conclusions Vocal advocates for benevolent psychiatric paternalism on the one hand, and for choice-driven recovery on the other hand, may always love to love and hate OPC, respectively; the treatment advocates warn of dangerous patients at large with “anosognosia”—illness unawareness—while the

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civil libertarians decry “forced drugging” and reject OPC as too coercive. Meanwhile, anecdotally, some clinicians who actually try to use OPC have told us that they find the law “toothless”—a weak intervention, at best, that is appropriate for very few patients. OPC programs do not authorize involuntary administration of medication in outpatient settings, after all, and their sanctions for noncompliance amount to little more than being transported to a treatment facility for evaluation. When asked what they think, psychiatric patients generally say they would prefer the mild restrictiveness of OPC to the alternative of involuntary hospitalization [60]. But people with serious mental illnesses in the United States have other serious concerns—keeping a roof over their head in a big city with too many homeless people, for example, or trying to find high-quality treatment in resourcestrapped treatment settings. To the extent that a court order may help improve their lives and material conditions, the trade-off of court supervision may be a lessor concern. We argue that there is ample room for consensus in the middle ground, where the real issue is not whether one favors or opposes any use of legal coercion in community mental health treatment, but for which subgroups it may be beneficial and appropriate, and how should it be applied, with what level of resources. We take the position that, whatever one thinks of OPC as a public policy, it is unfair to reject mandated treatment wholesale without considering the larger context of the real limits of a debilitating condition such as schizophrenia—the impoverishment of life’s choices, the loss of chances, and constrained self-determination. Coercion compared to what? Autonomy in what sense? Mandated community treatment, particularly if it includes intensive services and access to housing, offers a less-restrictive alternative to hospitalization or incarceration. The goal of mandated treatment is to ensure that beneficial treatment and case management are maintained consistently, rather than delaying intervention until re-hospitalization or incarceration is required. We conclude that court-mandated treatment can help some individuals adhere to a beneficial regimen of psychiatric treatment, and, importantly, may also commit providers to attempt more consistent engagement and outreach, in mobilizing resources and in leveraging more services on behalf of a patient. Admittedly, mandated treatment policy presents thorny dilemmas. Policy decisions about benefits and quality of life involve subjective evaluation. Which is worse: a year under court-ordered treatment or a week in the hospital or ten days in jail and probation for a minor crime? Worse for whom? Who decides this? And with whose money? Answering these questions for different states and local jurisdictions, with different kinds of

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populations and services delivery challenges, is a difficult task but one worth pursuing. OPC only affects a small proportion of people with severe psychiatric disorders. It does not fix a fiscal crisis that threatens to further shrink badly needed resources for mental health services—major reinvestment is needed, as argued in other chapters of this volume. But these policies, if appropriately resourced and implemented can offer a reasonable and measured approach to making effective treatment much more consistently available to many people with serious mental illnesses who, as a practical matter in the current world, may not be reached in any other way.

References 1. Beauchamp, T., & Childress, J. (2012). Principles of biomedical ethics (7th ed.). Oxford: Oxford University Press. 2. Petrila, J., & Swanson, J. W. (2011). Legislating social policy: Mental illness, community, and the law. In N. Cohen & S. Galea (Eds.), Population mental health: Evidence, policy and public health practice (pp. 139–160). New York: Routledge. 3. King, E. F. (1995). Outpatient civil commitment in North Carolina: Constitutional and policy concerns. Law and Contemporary Problems, 58, 251–281. 4. Swartz, M. S., & Swanson, J. W. (2002). Involuntary outpatient commitment in the United States: Practice and controversy. In Alec Buchanan (Ed.), Care for the mentally disordered offender in the community. Oxford: Oxford University Press. 5. Geller, J. L. (2006). The evolution of outpatient commitment in the USA: From conundrum to quagmire. International Journal of Law and Psychiatry, 29, 234–248. 6. Roskes, E. (2013). Assisted outpatient treatment: An example of newspeak? Psychiatric Services, 64, 1179. 7. Miller, R. D. (1988). Outpatient civil commitment of the mentally ill: An overview and an update. Behavioral Sciences & the Law, 6, 99–118. 8. Geller, J. (2013). Community treatment orders for patients with psychosis. Lancet, 382, 502. 9. Appelbaum, P. (2001). Thinking carefully about outpatient commitment. Psychiatric Services, 52, 347–350. 10. Swartz, M. S., & Swanson, J. W. (2008). Outpatient commitment: When it improves patient outcomes. Current Psychiatry Online, 7, 4. 11. Swartz, M. S., Burns, B. J., Hiday, V. A., George, L. K., Swanson, J. W., & Wagner, H. R. (1995). New directions in research on involuntary out-patient commitment. Psychiatric Services, 46(4), 381–385.

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12. Swanson, J. W., & Swartz, M. S. (2014). Why the evidence for outpatient commitment is good enough. Psychiatric Services, 65(6), 808–811. 13. Swartz, M. S., Wilder, C. M., Swanson, J. W., Van Dorn, R. A., Robbins, P. C., Steadman, H. J., & Monahan, J. (2010). Assessing outcomes for consumers in New York’s assisted outpatient treatment program. Psychiatric Services, 61, 976–981. 14. Wagner, H. R., Swartz, M. S., Swanson, J. W., & Burns, B. J. (2003). Does involuntary outpatient commitment lead to more intensive treatment? Psychology, Public Policy and Law, 9(1), 145–158. 15. Van Dorn, R. A., Elbogen, E. B., Redlich, A. D., Swanson, J. W., Swartz, M. S., & Mustillo, S. (2006). The relationship between mandated community treatment and perceived barriers to care in persons with severe mental illness. International Journal of Law and Psychiatry, 29(6), 495–506. 16. Van Dorn, R. A., Swanson, J. W., Swartz, M. S., Wilder, C. M., Moser L. L., Gilbert A. R., & Robbins P. C. (2010). Continuing medication and hospitalization outcomes after assisted outpatient treatment in New York. Psychiatric Services, 61, 982–987. 17. Winick, B. J. (2003). Outpatient commitment: A therapeutic jurisprudence analysis. Psychology, Public Policy, and Law, 9, 107–144. 18. Monahan, J., Bonnie, R. J., Appelbaum, P. S., Hyde, P. S., Steadman, H. J., & Swartz, M. S. (2001). Mandated community treatment: Beyond outpatient commitment. Psychiatric Services, 52(9), 1198–1205. 19. Swanson, J. W., Swartz, M. S., George, L. K., Burns, B. J., Hiday, V. A., Borum, W. R., & Wagner, H. R. (1997). Interpreting the effectiveness of involuntary outpatient commitment: A conceptual model. Journal of the American Academy of Psychiatry and the Law, 25(1), 5–16. 20. Gerbasi, J. B., Bonnie, R. J., & Binder, R. L. (2000). Resource document on mandatory outpatient treatment. Journal of the American Academy of Psychiatry and the Law, 28(2), 127–144. 21. Swanson, J. W., Van Dorn, R. A., Swartz, M. S., Robbins, P. C., Steadman, H. J., McGuire, T. G. & Monahan, J. (2013). The cost of assisted outpatient treatment: Can it save states money? American Journal of Psychiatry, 170(12), 1423–1432. 22. Swartz, M. S., & Swanson, J. W. (2013). Can states implement involuntary outpatient commitment within existing state budgets? Psychiatric Services, 64(1), 7–9. 23. Swanson, J. W., Swartz, M. S., & Moseley, D. (2018). Understanding outpatient commitment in context: When is it ethical and how can we tell? In A. Buchanan (Ed.), Care of the mentally disordered offender in the community. New York: Oxford University Press. 24. Buchanan, A., Swanson, J. W., Swartz, M. S., Mosley, D., Kisely, S., & Rugkåsa, J. (2018). Community psychiatric treatment under legal mandates: The international experience. In A. Buchanan (Ed.), Care of the mentally disordered offender in the community. New York: Oxford University Press.

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25. Swartz, M. S., Swanson, J., Kim, M., & Petrila, J. (2006). Use of outpatient commitment and similar civil court treatment orders in five United States communities. Psychiatric Services, 57(3), 343–349. 26. Services Administration (SAMHSA) awards up to $54 million for the assisted outpatient treatment program to help address the need of people who have experienced serious mental illness. press-announcements/201609091230. Accessed February 11, 2018. 27. Rosen, M. I., & Rosenheck, R. (1999). Substance use and assignment of representative payees. Psychiatric Services, 50, 95–98. 28. Cogswell, S. H. (1996). Entitlements, payees, and coercion. In D. Dennis & J. Monahan (Eds.), Coercion and aggressive community treatment. New York: Plenum. 29. Luchins, D. J., Hanrahan, P., Conrad, K. J., Savage, C., Matters, M. D., & Shinderman, M. (1998). An agency-based representative payee program and improved community tenure of persons with mental illness. Psychiatric Services, 49, 1218–1222. 30. Ries, R. K., & Comtois, K. A. (1997). Managing disability benefits as part of treatment for persons with severe mental illness and comorbid drug/alcohol disorders: A comparative study of payee and non-payee participants. American Journal of Addictions, 6, 330–338. 31. Rosenheck, R., Lam, J., & Randolph, F. (1997). Impact of representative payees on substance use by homeless persons with serious mental illness. Psychiatric Services, 48, 800–806. 32. Hanrahan, P., Luchins, D. J., Savage, C., Patrick, G., Roberts, D., & Conrad, K. J. (1999). Representative payee programs for mentally ill persons in Illinois: Census survey. Presented at the Institute on Psychiatric Services, New Orleans, October 29 to November 2. 33. Korman, H., Engster, D., & Milstein, B. (1996). Housing as a tool of coercion. In D. Dennis & J. Monahan (Eds.), Coercion and aggressive community treatment. New York: Plenum. 34. Matthews, A. (1970). Mental disability and the criminal law. Chicago: American Bar Foundation. 35. Wexler, D. B., & Winick, B. J. (1996). Law in a therapeutic key: Developments in Therapeutic Jurisprudence. Durham, NC: Carolina Academic Press. 36. Watson, A., Hanrahan, P., Luchins, D., & Lurigio, A. (2001). Mental health courts and the complex issue of mentally ill offenders. Psychiatric Services, 52, 477–481. 37. Steadman, H. J., Davidson, S., & Brown, C. (2001). Mental health courts: Their promise and unanswered questions. Psychiatric Services, 52, 457–458. 38. Monahan, J., Redlich, A. D., Swanson, J., Robbins, P. C., Appelbaum, P. S., Petrila, J., & McNiel, D. E. (2005). Use of leverage to improve adherence to psychiatric treatment in the community. Psychiatric Services, 56(1), 37–44.

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39. Swartz, M. S., Swanson, J. W., Steadman, H. J., Robbins, P. C., & Monahan, J. (2009, June). New York State assisted outpatient treatment program evaluation. Durham, NC: Duke University School of Medicine. Available at https:// Accessed February 25, 2018. 40. Swartz, M. S., Burns, B. J., George, L. K., Swanson, J. W., Hiday, V. A., & Borum, R. (1997). The ethical challenges of a randomized controlled trial of involuntary outpatient commitment. Journal of Mental Health Administration, 24(1), 35–43. 41. Petrila, J., Ridgely, S., & Borum, R. (2003). Debating outpatient commitment: Controversy, trends, and empirical data. Crime and Delinquency, 49, 157–172. 42. Link, B., Castille, D. M., & Stuber, J. (2008). Stigma and coercion in the context of outpatient treatment for people with mental illness. Social Science and Medicine, 67(3), 409–419. 43. Swartz, M. S., Swanson, J. W., & Hannon, M. J. (2003). Does fear of coercion keep people away from mental health treatment? Evidence from a survey of persons with schizophrenia and mental health professionals. Behavioral Sciences & the Law, 21, 459–472. 44. Munetz, M. R., Ritter, C., Teller, J. L., & Bonfine, N. (2014). Mental health court and assisted outpatient treatment: Perceived coercion, procedural justice, and program impact. Psychiatric Services, 6(3), 352–358. 45. Maughan, D., Molodynski, A., Rugkåsa, J., & Burns, T. (2014). A systematic review of the effect of community treatment orders on service use. Social Psychiatry and Psychiatric Epidemiology, 49(4), 651–663. 46. Kisely, S. R., Campbell, L. A., & O’Reilly, R. (2017). Compulsory community and involuntary outpatient treatment for people with severe mental disorders. Cochrane Database of Systematic Reviews (3), CD004408. https://doi. org/10.1002/14651858.cd004408.pub5. 47. Matter of K.L., 1 NY3d 362 (2004). 48. Torrey, E. F. (2008). The insanity offense: How America’s failure to treat the seriously mentally ill endangers its citizens. New York: W. W. Norton. 49. Swartz, M. S., Swanson, J. W., Wagner, H. R., Burns, B. J., Hiday, V. A., & Borum, W. R. (1999). Can involuntary outpatient commitment reduce hospital recidivism? Findings from a randomized trial in severely mentally ill individuals. American Journal of Psychiatry, 156(12), 1968–1975. 50. Swartz, M. S., Hiday, V. A., Wagner, H. R., Swanson, J. W., Borum, W. R., & Burns, B. J. (1999). Measuring coercion under involuntary outpatient commitment: Initial findings from a randomized clinical trial. Research in Community and Mental Health, 10, 57–77. 51. Swanson, J. W., Swartz, M. S., Borum, R. B., Hiday, V. A., Wagner, H. R., & Burns, B. J. (2000). Involuntary out-patient commitment and reduction of violent behaviour in persons with severe mental illness. British Journal of Psychiatry, 176, 324–331.

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52. Swanson, J. W., Borum, W. R., Swartz, M. S., Hiday, V. A., Wagner, H. R., & Burns, B. J. (2001). Can involuntary outpatient commitment reduce arrests among persons with severe mental illness. Criminal Justice and Behavior, 28(2), 156–189. 53. Swanson, J. W., Swartz, M. S., Elbogen, E., Wagner, H. R., & Burns, B. J. (2003). Effects of involuntary outpatient commitment on subjective quality of life in persons with severe mental illness. Behavioral Sciences & the Law, 21, 473–491. 54. Swanson, J. W., Swartz, M. S., Van Dorn, R. A., Robbins, P. C., Steadman, H. J., McGuire, T. G., & Monahan, J. (2013). The cost of assisted outpatient commitment: Can it save states money? American Journal of Psychiatry, 170, 1423–1432. 55. Robbins, P. C., Keator, K. J., Steadman, H. J., Swanson, J. W., Wilder, C. M., & Swartz, M. S. (2010). Regional differences in New York’s assisted outpatient treatment program. Psychiatric Services, 61(10), 970–975. 56. Swartz, M. S., Bhattacharya, S., Robertson, A. G., Swanson J. W. (2016). Involuntary outpatient commitment and the elusive pursuit of violence prevention: A view from the lower 48. Canadian Journal of Psychiatry. https://doi. org/10.1177/0706743716675857. 57. 21st Century Cures Act Public Law No: 114-255 (2016, December 13). 58. Results from the 2011 National Survey on drug use and health: Mental health findings. US Dept. HHS, SAMHSA, Center for Behavioral Health Statistics and Quality. Available at files/2k10MH_Findings/2k10MH_Findings/2k10MHResults.htm. Accessed February 11, 2018. 59. Pescosolido, B. A., Monahan, J., Link, B. G., Stueve, A., & Kikuzawa, S. (1999). The public’s view of the competence, dangerousness, and need for legal coercion of persons with mental health problems. American Journal of Public Health, 89, 1339–1345. 60. Swartz, M. S., Swanson, J. W., Hannon, M. J., Wagner, H. R., Burns, B. J., & Shumway, M. (2003). Preference assessments of outpatient commitment for persons with schizophrenia: Views of four stakeholder groups. American Journal of Psychiatry, 160, 1139–1146. 61. Swartz, M. S., Swanson, J. W., & Monahan, J. (2003). Endorsement of personal benefit of outpatient commitment among persons with severe mental illness. Psychology, Public Policy and Law, 9(1), 70–93. 62. Swanson, J. W., Van Dorn, R. A., Swartz, M. S., Cislo, A. M., Wilder, C. M., Mose, L. L., & McGuire,T. G. (2010). Robbing Peter to pay Paul: Did New York State’s outpatient commitment program crowd out voluntary service recipients? Psychiatric Services, 61, 988–995. 63. Swanson, J., Swartz, M., Van Dorn, R., Monahan, J., McGuire, T., Steadman, H., & Robbins, P. (2009). Racial disparities in involuntary outpatient commitment: Are they real? Health Affairs, 28, 816–826.

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64. Szmukler, G., & Kelly, B. D. (2016). We should replace conventional mental health law with capacity-based law. British Journal of Psychiatry, 209(6), 449–453. 65. Goldman, H. H. (2014). Outpatient commitment reexamined: A third way. Psychiatric Services, 65(6), 816–817. 66. Halpern, A., & Szmukler, G. (1997). Psychiatric advance directives: Reconciling autonomy and non-consensual treatment. Psychiatric Bulletin, 21, 323–327. 67. Swanson, J., Swartz, M., Elbogen, E., Van Dorn, R., Wagner, H., McCauley, B., & Kim, M. (2006). Facilitated psychiatric advance directives: A randomized trial of an intervention to foster advance treatment planning among persons with severe mental illness. American Journal of Psychiatry, 163, 1943–1951. 68. Swanson, J. W., Swartz, M. S., Elbogen, E. B., Van Dorn, R. A., Wagner, H. R., Moser, L. A., & Gilbert, A. R. (2008). Psychiatric advance directives and reduction of coercive crisis interventions. Journal of Mental Health, 17(13), 255–267. 69. Swanson, J. W., Swartz, M. S., Hannon, M. J., Elbogen, E. B., Wagner, H. R., McCauley, B. J., & Butterfield, M. I. (2003). Psychiatric advance directives: A survey of persons with schizophrenia, family members, and treatment providers. International Journal of Forensic Mental Health, 2, 73–86. 70. Swanson, J. W., Swartz, M. S., Ferron, J., Elbogen, E. B., & Van Dorn, R. A. (2006). Psychiatric advance directives among public mental health consumers in five U.S. cities: Prevalence, demand, and correlates. Journal of the American Academy of Psychiatry & Law, 34, 43–57. 71. Wilder, C. M., Swanson, J. W., Bonnie, R. J., Wanchek, T. N., McLaughlin, L. R., & Richardson, J. W. (2013). A survey of stakeholder knowledge, experience, and opinions of advance directives for mental health in Virginia. Administration and Policy in Mental Health and Mental Health Services Research, 40(3), 232–239. 72. American Psychiatric Association. Swartz, M. S., Hoge, S. K., Pinals, D. A., Lee, E., Lee, L. W., Sidor, M., … Johnson, R. S. (2015). Resource document on involuntary outpatient commitment and related programs of assisted outpatient treatment. Available at Accessed February 25, 2018. 73. Morrissey, J. P., Desmarais, S. L., & Domino, M. E. (2014). Outpatient commitment and its alternatives: Questions yet to be answered. Psychiatric Services, 65, 812–815. 74. Steadman, H. J., Gounis, K., Dennis, D., Hopper, K., Roche, B., Swartz, M., & Robbins, P. C. (2001). Assessing the New York City involuntary outpatient commitment pilot program. Psychiatric Services, 52(3), 330–336. 75. Burns, T., Rugkasa, J., Molodynski, A., Dawson, J., Yeeles, K., Vazquez Montes, M., & Priebe, S. (2013). Community treatment orders for patients

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8 Shared Decision-Making and Self-Directed Care Michelle P. Salyers and Yaara Zisman-Ilani

8.1 Framing the Issue In the past several decades, there has been growing awareness of and increased emphasis on patient1 involvement and engagement in medical interactions, treatment decisions, and broader healthcare domains [1]. This trend reflects the recognition that patient participation in care is an ethical imperative, central to respect for persons, and will likely improve health outcomes and build public trust [2, 3]. Accordingly, patients participate in a number of different ways: they decide, in varying junctures, whether and when to seek care, process and analyze information from different sources, reconcile potentially conflicting information and advice, and decide which plans and clinicians1 meet their needs. While patients are encouraged to take a greater role, clinicians struggle with providing care consistent with professional models that expect clinicians to not merely be the agent of the patient, but to use professional expertise to guide decisions, even when contradicting patient preferences [3, 4]. Balancing preferences and expertise with the realization that patients and clinicians need to work together is especially salient for people with chronic conditions [5]. According to the chronic care model, successful treatment M. P. Salyers (*)  Department of Psychology School of Science, ACT Center of Indiana, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA Y. Zisman-Ilani  College of Public Health, Temple University, Philadelphia, PA, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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of chronic health conditions requires active engagement of both the patient and clinician to foster productive interactions, emphasizing collaborative work of both parties [6]. Engaging people with chronic conditions in healthcare decision-making has been shown to be related to better health outcomes [7] and sustained improvements in the delivery, quality, and cost of chronic illness care [8]. Yet, disengagement from treatment, including low utilization of community services and nonadherence to treatment recommendations, is a long-standing issue, particularly in mental health [9, 10]. The reasons for treatment disengagement vary; some are related to adverse effects of psychiatric medications [11] or a mismatch between recommendations and “personal medicines” that patients find important for their own recovery [12]. Other disengagement factors are related to the stigma associated with mental illness [13] or to a lack of insight or awareness of what others may perceive as treatment and rehabilitation needs [14]. For some, disengagement is an intentional choice supported by alternative self-care strategies [15, 16]. Regardless of the reason, treatment disengagement often leads to negative outcomes that disrupt recovery processes (e.g., greater relapse, less employment) and bring economic and societal implications (e.g., more hospitalizations, incarcerations) [17]. There are several strategies to help engage people in treatment decision-making. Terms such as patient-centered care, self-directed care, and shared decision-making (SDM ) are often used, sometimes interchangeably, as a promising approach to support treatment engagement in order to improve health outcomes [18]. Yet despite similarities, these are distinct concepts with different levels of evidence and practical implications. The purpose of this chapter is to inform mental health policy and practices for engaging people in treatment decisions. We will first provide an overview of patient-centered care, SDM, and self-directed care in mental health. We will then address important questions facing our field, including the extant level of evidence for these approaches and factors related to implementing these practices, including patients, clinicians, and system-level factors that relate to US mental health policy.

8.1.1 Patient-Centered Care Patient-centered care2 is a “theoretical umbrella” (Fig. 8.1) that was broadly introduced by the Institute of Medicine in 2001 as one goal for improving health care [19]. Patient-centered care frames the importance of positioning

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Fig. 8.1  Patient-centered care, SDM, and self-directed care (Source Adapted from Smith and Williams [18])

the patient at the center of care, rather than the illness, clinician, or system [20]. Accordingly, the goal emphasizes that we work with a person who has a condition rather than treat a condition; we tailor care based on preferences and personal goals, rather than provide one-size-fits-all care [21]. In order to personalize care, we must incorporate preferences, values, communication style, culture, and broader life goals [22]. Patient-centered care also includes promoting health literacy through information and education, coordinating and integrating care, attending to physical comfort with a welcoming environment, providing emotional support, and encouraging patient engagement and involvement [23]. However, patient-centered care may not specify who has the power. For example, clinicians might make treatment decisions by taking into account what they perceive to be in the best interests of the patient. In addition, clinicians may struggle with this model because patient-centered care does not provide guidelines for operationalizing how to provide personalized, individual care.

8.1.2 Shared Decision-Making (SDM) SDM is a health communication model that evolved in medicine as a “bottom-up” approach, a methodology that emphasizes working together in making treatment decisions rather than the vast majority of decisions being made by either party [24]. The model attempts to balance power between patient and clinician as part of the treatment encounter, recognizing that both parties bring unique expertise and perspectives to these encounters.

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SDM has both proximal and distal goals; an immediate goal is to improve interpersonal interactions between a clinician and a patient (and sometimes with other people directly involved in the patient’s care) as part of a medical consultation. Long-term goals are to empower patients, support illness management skills, improve health outcomes, and facilitate better healthcare delivery [25]. Although SDM was introduced to mental health only a decade ago (later than in other medical fields [26]), its principles and methodologies are well-aligned with mental health practices of goal-setting, self-determination, empathy, active listening, and participation [27]. SDM has been conceptualized as a patient-centered methodology because it shifts the focus of the decision from the scientific consensus about treatment effectiveness to include preferences and what matters most to patients and their families [28].

8.1.3 Self-Directed Care Self-directed care can broadly refer to a range of services that emphasize personal involvement and management of life with an illness. However, the term has come to focus on a specific service delivery model of creating individual budgets to directly support the achievement of personally defined goals for treatment and rehabilitation [29]. Accordingly, service users have direct control over service delivery expenses (money to purchase goods and services) that allow freedom to choose providers and services that are not traditionally part of the mental health system. Self-directed care places the power (and responsibility) squarely in the hands of the service user. The model supports autonomy and self-management skills by enabling people to make decisions about services that best meet their needs and learn to manage a budget and financial plan in support of their goals [18, 29, 30]. This way, self-directed care allows for maximum personalization of care by enabling people to identify and select the services they believe will facilitate their mental health and recovery [31].

8.2 Questions Patient-centered care provides a general frame and context for the mental health system, while SDM and self-directed care provide more specificity and guidance for how to engage patients with increasing emphasis on personal choice and autonomy. Despite some concerns about the applicability

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of SDM and self-directed care for people with severe mental illness [32, 33], we are witnessing a burgeoning of research in these areas. Yet, neither model is widely used, and direct evidence for the impact of choice in mental health is limited. This leads us to identify key questions that we attempt to address in the Evidence section, with the hope of clarifying, or at least highlighting, critical issues for effective policy in balancing the preferences and expertise of various participants in the mental health system.

8.2.1 What Is the Evidence for Consumer Choice and the Specific Interventions Targeting SDM and Self-Directed Care? For this first question, we discuss the importance of choice, its potential versus its real-world effectiveness in mental health research, and the role of choice in interventions targeting patients, clinicians, and patient–clinician interaction.

8.2.2 What Are the Challenges and Barriers to Implementing Consumer Choice in SDM and Self-Directed Care? Healthcare systems struggle to implement these models, citing lack of resources, time, or poor fit into workflow or larger systems of care [34]. Specifically, we examine the role clinician and patient factors play in consumer choice. Clinicians and patients can serve as a barrier; both need to be philosophically aligned and open to fundamental changes in traditional healthcare roles. Indeed, there are competing perspectives on the most appropriate roles of clinicians and patients (and their families) regarding mental healthcare decisions [35]—whose preferences and expertise should guide care and how? We also examine how system factors, including insurance and financial status, affect opportunities for consumer choice. We discuss gaps in the fit of the particular innovations and with the organizational or structural characteristics, which will determine likelihood of implementation. Finally, we consider whether choosing not to engage in treatment is a prerogative or a problem. At the core of this discussion is the unstated assumption that engagement in mental health treatment is both desirable and beneficial for the person experiencing mental health concerns. Yet, what about choosing not to engage? Our discussion refers to the ethical considerations underpinning this dilemma.

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8.3 Evidence The evidence relevant to these issues encompasses a range of topics involving patient choice; a variety of management strategies targeting patients, clinicians, and their interactions; as well as a number of system and ethical factors. Below we highlight current evidence, gaps in the knowledge base, and directions for future research in each area.

8.3.1 Patient Choice The role of choice has been highlighted as important for treatment engagement (e.g., satisfaction with care), health outcomes (e.g., symptoms, recovery, health behaviors), and policy outcomes (e.g., healthcare cost). For example, in the broader medical field, meta-analyses of patient preference trials have shown small, but significant, positive effects favoring better clinical outcomes for patients who have been randomized to their preferred condition [36]. However, there are actually few studies that empirically assess the impact of choice in mental health care using randomized designs. A recent review of SDM interventions in mental health settings [37] found that out of 31 studies, only 13 used randomized designs (RCT or cluster RCT). The results of these 13 studies were mixed, and most studies assessed “soft” outcomes, such as proximal goals of SDM (e.g., involvement, engagement, knowledge) and satisfaction. Although some included measures of quality of life, few studies measured clinical outcomes (e.g., functioning, relapse, adherence, goal attainment), and only a few studies have assessed the degree of choice in service engagement. For example, using a randomized design, homeless people with severe mental illness who chose Assertive Community Treatment had better treatment engagement (more frequent visits) but not better outcomes (e.g., housing status, symptoms) than those who had no active choice [38]. Similarly, a prospective correlational study of perceived choice in services for homeless people found that choice in services had little relationship to housing outcomes; however, choice over housing environment predicted better well-being 6 and 12 months later [39]. Choice may be associated with better clinical outcomes, but direct evidence in mental health is limited. More research has been done on mandated treatment at the other end of the choice spectrum. Outpatient commitment is one such approach wherein people with specific legal orders to participate in treatment can be institutionalized (e.g., involuntarily admitted to the hospital) for violating those commitment orders (i.e., not participating in treatment). A recent review of

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both observational and experimental studies concluded that outpatient commitment did not result in better outcomes [40]. In fact, perceived coercion can be detrimental to mental health treatment engagement. For example, Swartz and colleagues [41] surveyed people with schizophrenia, and a substantial proportion (36%) reported that fear of coerced treatment was a barrier to seeking treatment. [Also see Chapter 7 in this Handbook.] Despite limited empirical evidence, there are clearly ethical, theoretical, and practical reasons for supporting choice, and a number of strategies have been put forward to increase involvement. These approaches can be loosely categorized as strategies that target patients, clinicians, or both parties. Below we describe key exemplars of these strategies and the empirical evidence supporting them.

8.3.2 Strategies Targeting Patients A number of strategies have been used to target patients including training in self-management and technological approaches to support selfmanagement; helping develop personal budgets; and preparing for decisionmaking, with written tools, including advance directives, and coaching to be more actively involved. Self-Management Interventions By equipping people with tools to effectively understand and manage mental illness, they are better able to pursue and participate in other important life activities. Within the framework of the chronic care model, self-management programs also prepare people to be better partners in the treatment process [6]. Early self-management interventions focused on psychoeducation, a didactic approach to teach patients, and often family members, about the illness [42]. While most mental health interventions include some level of psychoeducation, education alone is not effective beyond improvements in knowledge and attitudes [43]. Mueser and colleagues [44] identified core components for effective self-management in an extensive review of controlled studies; these included psychoeducation, cognitivebehavioral approaches to medication adherence, relapse prevention, social skills training, and coping skills training. Based on this work, a comprehensive program was developed, Illness Management and Recovery (IMR), with the explicit goal of creating a single program to integrate effective selfmanagement approaches [45].

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The IMR curriculum consists of modules that can be delivered in individual or group format using educational, cognitive-behavioral, and motivation-based strategies to help people identify and pursue recovery goals and learn effective ways to manage illness. IMR has a strong evidence base and has been translated to a number of different languages, with international adoption. A review of the program 10 years after development identified three RCTs and 6 quasi-experimental studies [46]; the authors concluded that the intervention was effective in enhancing self-management and reducing symptom burden. Since then, subsequent RCTs have included mixed findings. While IMR was found to be more effective than usual treatment in Sweden for improving self-management, functioning, and symptoms [47], Dalum et al. found no advantage for IMR compared to usual treatment in Denmark [48]. Similarly, Salyers and colleagues [49] did not find an advantage for IMR over an active control condition focused on problem-solving. Other recent randomized trials have focused on adaptations; for example, a brief version for inpatient care focused on symptom management and effective use of medications [50]. Another study adapted the program for people with comorbid chronic health conditions by integrating physical health self-management [51]. Overall, the majority of the evidence, including controlled studies, supports the provision of IMR for self-management of mental health conditions. In addition to IMR, another popular approach incorporating selfmanagement in the service of recovery is the Wellness Recovery Action Plan (WRAP) [52]. WRAP is a peer-delivered intervention of 8–12 weekly sessions to help people identify personal recovery goals and develop a toolbox of individualized strategies to manage mental health conditions. Despite broad appeal and widespread use, the research base for WRAP is still developing. A multisite RCT found an advantage for WRAP over a wait-list control, demonstrating improved symptoms, hope, and quality of life [53] as well as self-reported recovery [54]. A second RCT with a nutritionaleducation control group found significantly greater reduction in needed mental health services for WRAP participants but similar levels of improvement in symptoms and self-reported recovery [55]. Technological Approaches to Self-Management Technology that specifically targets mental health has been proliferating at a rapid pace. Terms like telehealth, e-health (electronic), m-health (mobile), and more recently c-health (connected) and u-health (ubiquitous) are becoming common in mainstream conversation [56]. Systematic reviews have focused

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on types of technology. For example, reviews have centered on smartphone applications for people with schizophrenia [57] or other mental health conditions [58]. Reviews have also been broader to include online, social media, and mobile health applications for people experiencing psychosis [59]. In addition to these user-led technologies, there are clinician-led technologies such as telepsychiatry [60] or computerized versions of clinician-delivered treatment (e.g., IMR [61]). Literature reviews have also focused on functions of user-led technology. Naslund and colleagues [62] differentiated four functions fulfilled by user-led technology in mental health: to provide illness self-management, promote adherence to treatment, promote health and recovery, and monitor symptoms. However, in reality, these functions often overlap. Given that multiple reviews have been conducted, each dividing the literature “pie” in a myriad of ways, it is difficult to make strong conclusions on the effectiveness of specific technologies, serving specific functions, in specific populations. Similar confusion abounds in broader health fields, hence the recommendation for a unified taxonomy of functionality, application, and technology type [56]. Looking across recent reviews, a few observations may be tendered. Most of the extant studies, particularly for people with severe mental illness, have focused on feasibility and acceptability. For example, in a recent review [57], only five studies examined smartphone applications for people with schizophrenia and none were RCTs. Most were focused on symptom monitoring, though a few included promising interventions. For example, FOCUS [63] is a comprehensive self-management program that includes symptom monitoring and targeted interventions to overcome mood and psychotic symptoms, social isolation, use of medications, and sleep disturbance. Pilot testing showed a high rate of use and improvements in symptom domains one month later [64]. In a review of 46 e-health and m-health interventions [62], the strongest conclusion was that these interventions are indeed feasible, but heterogeneous outcomes and study design precluded conclusions of effectiveness. Moreover, almost a quarter of the studies had been published in the year prior to publication of the review. Therefore, we are likely just on the brink of a cascade of technology-based studies. Reviews focusing on controlled studies and clarifying evidence along key dimensions of the taxonomy will be critical as evidence accumulates. Personal Budget Strategies As noted above, specific models of self-directed care provide financial resources such that people determine which goods or services will best meet

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their needs [30]. Such programs involve support from a “broker” who helps the person set recovery goals, identify what might best help achieve those goals, and assist the person in requesting money to pay for those services [29, 31]. There are two types of personal budgets: the “open” model in which recipients can spend their cash allowance however they choose, and the “planned” model in which the money is spent according to a plan that must be approved by a third party [18]. By placing financial control directly in the hands of the service user and allowing for purchase of nontraditional services (i.e., beyond typical mental health treatments), self-directed care falls at the far-right end of the continuum of patient-centered approaches as shown in Fig. 8.1. Although self-directed care programs have been available for decades for people with disabilities in the US and UK, specific applications for people with mental illness were slow to follow [29, 65]. An early pilot study targeting people with mental illness suggested that self-directed care was feasible and that participants experienced gains in community tenure and functioning [29]. In a large multistate, randomized trial of self-directed care, secondary analyses were conducted on a subsample with mental illness and found that participants in self-directed care were more satisfied with care and with life, had fewer unmet health needs, and did not differ in adverse events from those who were not randomized to self-directed care [66]. Webber and colleagues [65] conducted a systematic review of studies related to self-directed care in mental health and at that time identified only two RCTs: the study by Shen et al. [66] and an unpublished study in the UK. Differences in methodology make it difficult to summarize across studies. A recent report of an international learning community focused on self-directed care recommended that rigorous quantitative data, as well as narrative studies, were needed in order to capture and convey the impact of such models of care [67]. Preparing for Treatment Decision-Making While self-management interventions aim to improve broader skills to be more active in managing health, a number of strategies have been developed to help patients take a greater role in decision-making through the use of decision aids, advance directives, and coaching. Decision aids, or decision support tools, provide brief, evidence-based information on comparable treatment options in order to facilitate SDM between clinicians and patients within the inherent limitations of short consultation times [68]. A recent Cochrane systematic review of decision aids indicates that these tools increase knowledge, risk perception, satisfaction,

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and participation in decision-making [68]. Several decision aids have been developed to target treatment decisions specific to mental health. For example, in Canada, an Informed Choice about Depression decision aid was developed in both web and paper formats to address depression treatment in primary care settings [69]. This decision aid addresses a wide range of topics judged to be important by patients with information presented in modules focused on particular questions, with up-to-date evidence and references. Similarly, an online decision aid was recently developed in Australia for primary care settings providing depression treatment to youth aged 12–25 [70]. Several decision aids specifically focused on antipsychotic medications have recently been developed. For example, in the UK, the Medication Review Tool was developed to help patients participate in discussions and decisions about antipsychotic medication [71]. In the United States, an encounter decision aid for taking, adjusting, or stopping antipsychotic medications was recently developed in both paper and web-based formats, with the primary aim to help patients, clinicians, and family members openly discuss this dilemma [72, 73]. To date, only two of the above reviewed decision aids were tested for initial preliminary validation. The Medication Review Tool was tested with a cluster randomized trial in a community mental health center in the UK [71]; quantitative analysis found no effects on clinical outcomes (e.g., symptoms and side effects), decision self-efficacy, or satisfaction with treatment. However, qualitative feedback indicated that participants valued the tool for identifying both positive and negative aspects of medications. The decision aid for youth depression was pilot tested using a pre-post cohort design in primary care treatment facilities in Australia [70]. After using the decision aid, patients were more likely to make decisions concordant with guideline recommendations, had reduced decisional conflict, and felt involved and satisfied with their decision. Patients also reported significantly reduced depression symptoms and greater adherence to treatment. Although promising, more rigorous studies are needed to test the impact of decision aids in mental health. Advance Directives In addition to tools to help make decisions, “advance directives” specify treatment directions developed by the patients to be implemented when that person may not be able to participate actively in decision-making [74]. Henderson and colleagues [75] define various types of directives, differentiating based on whether directives are legally binding, clinicians are involved,

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and external facilitation is needed. Evidence suggests that although people want advance directives, they frequently do not develop these plans [76, 77]. Indeed, developing advance directives can be considered a deliberative process, often requiring extensive imagination, reflection, resource engagement (including potential surrogate decision-makers), and sustained effort to complete the plans [78]. Approaches have been developed to facilitate completion of these advance directives, for example, with software and peer support [79] or manualized guided discussion [80]. There have been few controlled studies of advance directives. Papageorgiou and colleagues [81] conducted an early controlled study of patients who had been involuntarily hospitalized in England. Patients were randomly assigned to treatment as usual or to complete a pamphlet describing future preferences for treatment, though not legally binding; 12 months after discharge, there were no differences between groups in symptoms, self-efficacy, or rehospitalization. The approach used in the inpatient setting was minimally facilitated, asking for help if needed. In contrast, Henderson and colleagues studied what they termed “joint crisis plans,” which were advance directives completed in collaboration with clinicians and an outside mediator [82]. Outpatients with severe mental illness who had been hospitalized in the past two years were randomly assigned to either the joint crisis plan intervention or to receive referral information; those in the intervention group were less likely to be involuntarily hospitalized during the follow-up period. However, a later randomized trial in a larger multisite sample in England did not find any advantage for joint crisis plans in hospital readmissions but did find some improvement in therapeutic relationships [83]. Swanson and colleagues studied a different type of facilitated advance directive in the United States that included manualized coaching discussions with a trained facilitator, independent of clinicians [80]. Patients who were randomly assigned to facilitated directives were significantly more likely to complete a directive than those who received referral information about directives. The facilitated group also reported greater working alliance with clinicians; however, rehospitalization rates were not reported. A follow-up study of participants found that those who completed a psychiatric advance directive did report fewer coercive interventions following completion of the plan [84]. Coaching to Be Active in the Decision-Making Process In addition to written tools to better understand treatment decisions (decision aids) and plan for future decision points (advance directives),

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some approaches take a more directed role in preparing people to make decisions in treatment. Early studies in the medical field showed that relatively brief interventions focused on activating patients, such as a 20-minute coaching session just prior to a doctor’s visit, could have lasting health benefits [85]. These types of interventions have been applied in the mental health field, using different techniques. Hamann and colleagues tested “question prompt sheets” for 100 outpatients with depression [86]. Just prior to a visit with the psychiatrist, half the participants were randomly assigned to complete a worksheet describing what they wanted to get out of the sessions and instructed them to identify questions. However, compared to treatment as usual, the prompt sheets did not appear effective in changing patient behavior during a consultation. A systematic review of question prompt sheets found mixed results, showing some evidence for increased questions during an encounter but little change in other outcomes [87]; further, the authors noted a key issue for effectiveness is whether the clinician explicitly encourages discussion of the questions. In contrast, Alegría and colleagues [88, 89] have developed a more active coaching intervention to overcome health disparities. The DECIDE approach is more intensive than question prompt sheets by incorporating three individual coaching sessions with cognitive-behavioral strategies (e.g., role play, homework) to empower patients to take a greater role and prepare for visits with the clinicians. Coaches also discuss cultural issues that might impede taking an active role. The initial evaluation was promising, showing improved self-reported activation and greater retention and attendance in subsequent services [88]. The intervention was later tested in a more rigorous, multisite RCT with a diverse sample [89]. Compared to patients who received a mental health brochure, those randomized to the DECIDE intervention had significant improvements in activation and self-management; however, effects were not seen for retention and attendance in services for the 6 months after the intervention. Other coaching interventions have had promising results in mental health [90]. In addition, conceptual models of the coaching role may help facilitate future development of effective models in mental health [91].

8.3.3 Strategies Targeting Mental Health Clinicians In addition to patients, strategies may focus on clinicians, aimed at enhancing SDM directly or through related interventions.

210     M. P. Salyers and Y. Zisman-Ilani SDM-Specific Interventions With the growing understanding that a major barrier to using SDM interventions is the common belief that clinicians are “already doing it” [92], efforts have begun to focus on developing clinician-oriented training to enhance SDM. Two reviews [93, 94] found a total of 148 training programs between the years 1996 and 2016. These reviews were designed to be broad and to include all training activities whose objectives related to improving knowledge of SDM among health professionals. The inclusion criteria were: (a) contain an SDM component (i.e., including a treatment decisionmaking juncture), (b) consist of a training activity (e.g., online or as a traditional course), and (c) use a recognized instructional method (e.g., lectures, workshops). Out of the 148 programs, only two focused on mental health settings, and neither was published in peer-reviewed journals. More recently, Ramon and her colleagues [95] developed a training program in the UK by soliciting feedback about the process of SDM for psychiatric medications from a multidisciplinary working group of patients, clinicians (psychiatrists, a mental health nurse, and a pharmacist), and researchers. Training was designed to be delivered to patients, care coordinators, and psychiatrists in parallel but separate groups, using a range of interactive learning methods (e.g., videos of clinical scenarios, small group exercises, role plays, discussion forums). Training was provided conjointly by a clinician and patient trainer. This effort is the first attempt in the UK (and to the best of our knowledge—anywhere else) to develop and successfully evaluate a training intervention that targeted clinicians to promote SDM for psychiatric medication. Related Interventions Although few training opportunities have directly addressed SDM, other training approaches have been developed to help clinicians better engage patients. For example, person-centered treatment planning is one way that mental health professionals could individualize treatment goals [96]. Perhaps the most ubiquitous training approach for mental health clinicians is motivational interviewing that helps clinicians elicit internal motivation by helping people identify and resolve ambivalence about changing behavior [97], typically by exploring personal perspectives and perceived barriers to change. In a large meta-analysis, motivational interviewing outperformed traditional “advice giving” for a broad range of issues [98]. Motivational interviewing

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also has been linked to patient-centered care and engagement; for example, in a study of smoking cessation, working alliance and patient engagement were positively related to therapist use of motivational interviewing techniques in-session, while confrontation was negatively related to alliance [99].

8.3.4 Strategies Targeting Patient–Clinician Interaction Ideally, strategies should incorporate tools and supports for patients, clinicians, and their interactions. CommonGround is such a program that has received a great deal of attention in the mental health field [100]. CommonGround is a decision support system [101], and it integrates all of the strategies described in this chapter: education and self-management materials, computer technology, decision-aids, peer support and coaching in how to make decisions, and training for patients as well as clinicians (including entire teams). CommonGround was initially developed to support SDM around medication choices through extensive research in understanding how people manage their well-being [12] and in collaboration between patients and clinicians [100]. The initial study was promising, showing improved communication, including more shared treatment decisions, and a greater emphasis on recovery-oriented goals [100]. Three subsequent CommonGround evaluations reported varied findings, depending on the outcomes assessed. MacDonald-Wilson and colleagues [102] implemented CommonGround across a large system and found significantly improved symptoms and functioning and fewer concerns about medication side effects but no changes in medication use [103]. Salyers and colleagues studied four teams and found improvement in self-reported symptoms and recovery attitudes [104]. Although self-reported involvement in treatment did not change, those with the same clinicians were rated as being more involved over time. However, these three studies were not controlled and so changes over time cannot be attributed directly to the intervention itself. Mental health systems are also developing adaptations. For example, the Psychiatric Clinical Knowledge Enhancement System is being implemented across the state of New York [105], researchers in Japan have developed a similar system [106], and Momentum is a smartphone application developed in Denmark and inspired by CommonGround [107]. More rigorous evaluations informed by implementation science are needed to determine effectiveness and how best to successfully integrate systems like CommonGround into resource-stretched service systems.

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8.3.5 Overcoming Barriers to Implementing SDM and Self-Directed Care Although SDM and self-directed care have been recommended for mental health care at policy levels, and interventions and tools have been developed, implementation efforts and efforts to grow the evidence-base are still lacking [67, 108]. In this section, we address key barriers and potential solutions to these challenges. Patient and Clinician Factors People with mental health conditions face numerous challenges regarding participation, including fundamental questions regarding the capacity to participate fully in treatment decisions [109, 110]. Primary symptoms of some mental illnesses can impair judgment and the ability to effectively communicate preferences and experiences. For example, poor insight is a common symptom of schizophrenia [111] and can challenge efforts to help people identify and implement care options [112]. Similarly, severe lack of motivation can affect willingness to participate in discussions about health, acquire new information, or be involved in the decision-making process [32]. In turn, increased symptoms may lead clinicians to take a more authoritative or paternalistic approach [113]. In addition to psychiatric symptoms, people with severe mental illness are likely to have low levels of health literacy [114]—a set of cognitive and social skills that determine the motivation and ability of individuals to gain access and utilize healthcare services to achieve health goals [115]. In mental health, a qualitative investigation of decision-making experiences [116] showed that while people with higher levels of education and literacy viewed themselves as sharing the decisions with the clinician, those at the lower extreme primarily viewed their involvement in terms of consenting to an option recommended by the clinician. Another factor affecting active involvement in mental health care is public stigma toward those labeled with a mental illness [117]. Although stigma may be met with a number of different responses, one pernicious effect of stigma is the internalization of negative attitudes, which results in a diminished sense of self-esteem and self-efficacy [118]. Self-stigma has been linked to reduced seeking of mental health information [119], less service use [13], and poor quality of the therapeutic alliance [120]. Thus, people with high self-stigma might have less desire to participate in decision-making and may

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exhibit more passive behavior in clinical settings. This could result in more paternalistic decision-making and may represent another way in which selfstigma leads to poorer health outcomes [121]. Some self-management interventions attempt to overcome internalized stigma by instilling hope and giving tools to more effectively manage mental health [45]. Other programs directly target self-stigma, aiming to increase people’s ability to develop positive stories and perceptions about themselves and their illness [122]. Some forms of technology may also help. For example, online communities and peer support via social media platforms offer new ways to challenge stigma, increase activation and engagement, and open opportunities to access treatment or to get help outside of the treatment system [123]. Clinicians treating people with mental illness also experience barriers to engaging people. Regarding SDM, mental health clinicians are likely to experience barriers similar to other treatment providers, such as the feeling that they are “already doing it” and lack time to do things differently [92]. A study of 352 psychiatrists in Germany [113] found that SDM was seen as useful for well-informed and compliant patients and for those who currently dislike their antipsychotic medication but was not as useful for patients with reduced decisional capacity. Psychiatrists viewed psychosocial matters (e.g., work therapy, future housing, and psychotherapy) more suitable for SDM than medical and legal decisions (e.g., hospitalization, prescription of antipsychotics, and diagnostic procedures). Other clinician-related barriers may be related to stigma about people with mental conditions [117, 124], clinician’s fear of losing the essential role of the clinician in the consultation [125], and difficulty accepting an active patient’s role in decision-making [32, 33]. Reactions to self-directed care are similar to clinician reactions to SDM. Clinicians sometimes see people with enduring mental health problems as incapable of managing personal budgets [65], resulting in barriers for implementing self-directed care. Other barriers may include concerns about the levels of bureaucracy that have accompanied personal budgets [126] and the quality of support provided [65]. A recent review of personal budgets in the UK from the perspective of clinicians and people with learning disabilities suggested that more training is needed to support and help people manage budgets [127]. System Factors There are a number of system-level factors, or what some have termed organizational and structural factors [128], that may facilitate or impede

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implementation of SDM and self-directed care interventions. Frameworks used in implementation science often describe the fit of the particular innovation with the organizational or structural characteristics that will help determine how likely implementation will occur [129]. At one end of the continuum, some decision aids require minimal organizational and structural adjustments as brochures can be distributed in a waiting room with minimal time or resource burden. In contrast, decision support systems like CommonGround require expensive infrastructure modifications, for example, creating a decision support room with kiosks, changing work-flow so that participants can visit the decision support center and peer support specialist prior to meeting with the clinician, and integrating the computer technology of CommonGround within the record keeping of the organization [101]. Given these demands, a number of barriers may need to be overcome for a given organization to be successful (e.g., fitting into the existing service structure, how to manage turnover of trained clinicians, and perceived clinician burden) [130]. With taxed resources and strains on clinicians [131], these types of changes can be difficult for organizations to overcome, requiring a high level of leadership commitment, mobilization of resources, and culture change throughout an organization. Structural barriers may be the greatest concern for self-directed care models as those strategies involve changing public funding systems to allow participants to choose goods or services from a number of different organizations. Barriers related to defining the scope of appropriate services had to be overcome in order to use Medicaid funding in unique ways [30]. Croft and colleagues [67] also describe the substantial culture shift required for selfdirected care to take hold. This is not just a new program but represents a fundamental shift in how power is distributed between patients, clinicians, and funders. Another key structural barrier relates to health disparities—significant differences in health outcomes for groups of people with social or economic disadvantage [132]. For example, disease and mortality risk are greatest among people living at the lower end of the socioeconomic spectrum, most notably among racial/ethnic minority groups [133]. Although SDM and self-directed care both espouse the ideals of free choice, not all options are necessarily open and available to people from disadvantaged groups [134]. For example, although the Affordable Care Act was associated with greater insurance coverage for minority groups [135], many still experience a delay in access to health care or reduced quality of health care [136]. Once people do access care, there are often differences in how people are treated. For example, in the context of SDM, Eliacin and her

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colleagues [137] interviewed 49 African-American veterans with mental illness; participants identified perceived lack of empathy and poor personal connection with the clinician as important factors in lack of patient involvement. As noted above, Alegría’s DECIDE intervention [89] was initially developed to help minorities with mental disorders overcome health disparities by coaching participants to identify potential decisions regarding care, generate and refine questions for visits with clinicians, and promote interactions that allow needs to be shared and addressed. Overcoming system-level barriers requires new collaborations and innovation. Stakeholder-engaged research, in various forms such as Participatory Action Research or Community-Based Participatory Research, is particularly useful for working on system change efforts like self-directed care [138]. For example, Cook and colleagues [139] described such a stakeholder-involved process to overcome potential barriers in implementing self-directed care in Texas. In another example, Cook and others [140] conducted an innovative policy analysis with multiple stakeholders in Canada in order to make policy recommendations regarding self-directed care in relation to health equity, specifically identifying areas of need for culturally consistent use of these strategies across a number of domains. Ethical Factors We have detailed issues, challenges, and interventions to support SDM and self-directed care in the context of a patient-centered approach to mental health recovery. At the core of this discussion is the unstated assumption (and perhaps bias) that engagement in mental health treatment is both desirable and beneficial for the person experiencing mental health concerns. Yet, we have not broached the elephant in the room—what about choosing not to engage? Is not engaging in the mental health system a prerogative or a problem? Several authors have called for a change in how we think about treatment engagement or lack thereof [Also see Chapters 4 and 20 in this Handbook]. Roe and Davidson [15] describe a number of reasons why we should not consider treatment disengagement an adverse event. Similarly, Corrigan and colleagues [141] addressed these issues in calling for a shift from a focus on adherence to embracing ideas of self-determination and reminding us that “people should have the freedom to choose, and they make choices all the time” (p. 172). Not all of our choices may be “good” in the sense of supporting our well-being or forwarding our goals, but people have the right

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to make bad choices or fail [142]. At the same time, clinicians have an ethical imperative to help patients and may experience legal (or other) ramifications for failing to step in. Paternalistic practices are likely greater when the perceived risk is higher. For example, small communities may have fewer resources and clinicians may feel a greater need to exercise control over behaviors that might reduce those resources for future patients [143]. Practices of SDM and self-directed care have the potential to directly address this elephant in the room. By giving financial control to the person, self-directed care allows the person to choose what they want to invest service money toward, and most programs allow those choices to include goods or services outside of the mental health system. However, we also recognize that there may be times when medical intervention is needed, and resources for hospitalization should be available for emergencies as needed. SDM, if done well, also holds the promise of embracing the choice to not engage in care. With regard to medication decisions, a close analysis of the processes involved in deciding not to continue medications highlighted the important role of collaborating with a trusted clinician [16]. However, the decision to stop taking medications may not be explicitly discussed. Beyond medications, technological innovations may also help people meet goals for wellbeing and recovery outside the mental health system through online forums for self-help or independent apps for self-management [123].

8.4 Conclusion The mental health field has come a long way in embracing the philosophy of patient-centered care. By adapting approaches like SDM and self-directed care, the mental health system can instill greater involvement and control in the recovery process. However, we still see plenty of opportunities for continued growth and improvement. Clearer definitions and well-defined strategies are needed to support policy implementation efforts, including greater acknowledgment of SDM and self-directed care and allocation of resources for this purpose. A number of barriers need to be overcome, including philosophical issues of choice and control, patient and clinician factors, and broader organizational and structural factors. Given the wide range of practices reviewed, it is difficult to make sweeping generalizations about their effectiveness. However, more passive approaches, like providing a simple decision aid, may not be enough to effectively change self-management or recovery outcomes. Yet, at the other end of the intervention spectrum, implementing an entire decision support

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system has a number of barriers that need to be overcome. Similarly, selfdirected care as a financing model requires large coordinated investment in changing infrastructure. It is unclear whether there is a happy medium to be achieved. So, although it is unlikely that an “easy, but effective” approach is waiting to be discovered, we can develop better ways to overcome challenges of these more intensive approaches. Indeed, partnering with patients, clinicians, policy makers, and other stakeholders to develop and test innovations is a critical step and mirrors the very patient-centered care practices we seek to enhance.

Notes 1. We recognize the mental health field uses a wide variety of terms to refer to people who are using treatment services (e.g., patient, service user, consumer, client, and survivor). Here we use the term “patient” when referring to patient-centered care models and people already engaged in the healthcare system. We also use the term “clinician” to describe the variety of professional healthcare providers that may interact with patients in the mental health system. 2. Although person-centered care and other terms such as client-, family-, and relationship-centered care are prevalent in the mental health field, in this chapter we use the term patient-centered care to be consistent with the broader medical field and the frame of patient-centered care that is emphasized in this chapter.

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107. Korsbek, L., & Tønder, E. S. (2016). Momentum: A smartphone application to support shared decision making for people using mental health services. Psychiatric Rehabilitation Journal, 39(2), 167–172. 108. Ramon, S., Zisman-Ilani, Y., & Kaminskiy, E. (2017). Shared decision making in mental health, Guest editorial. Mental Health Review Journal, 22(3), 149–151. 109. Hamann, J., & Heres, S. (2014). Adapting shared decision making for individuals with severe mental illness. Psychiatric Services, 65(12), 1483–1486. 110. Karnieli-Miller, O., & Salyers, M. P. (2011). Clinical communications with persons who have severe mental illnesses. In A. Rudnick & D. Roe (Eds.), Serious Mental Illness: Person-Centered Approaches. London: Radcliffe. 111. Amador, X. F., & Strauss, D. H. (1993). Poor insight in schizophrenia. Psychiatric Quarterly, 64(4), 305–318. 112. Lysaker, P. H., Roe, D., & Yanos, P. T. (2007). Toward understanding the insight paradox: Internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophrenia Bulletin, 33(1), 192–199. 113. Hamann, J., Mendel, R., Cohen, R., Heres, S., Ziegler, M., Buhner, M., & Kissling, W. (2009). Psychiatrists’ use of shared decision making in the treatment of schizophrenia: Patient characteristics and decision topics. Psychiatric Services, 60(8), 1107–1112. 114. Jorm, A. F., Korten, A. E., Jacomb, P. A., Christensen, H., Rodgers, B., & Pollitt, P. (1997). ‘Mental health literacy’: A survey of the public’s ability to recognise mental disorders and their beliefs about the effectiveness of treatment. Medical Journal of Australia, 166(4), 182–186. 115. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science and Medicine, 67(12), 2072–2078. 116. Smith, S. K., Dixon, A., Trevena, L., Nutbeam, D., & McCaffery, K. J. (2009). Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social Science and Medicine, 69(12), 1805–1812. 117. Corrigan, P. (2004). How stigma interferes with mental health care. American Psychologist, 59(7), 614–625. 118. Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental illness. World Psychiatry, 1(1), 16–20. 119. Lannin, D. G., Vogel, D. L., Brenner, R. E., Abraham, W. T., & Heath, P. J. (2016). Does self-stigma reduce the probability of seeking mental health information? Journal of Counseling Psychology, 63(3), 351–358. 120. Kvrgic, S., Cavelti, M., Beck, E.-M., Rüsch, N., & Vauth, R. (2013). Therapeutic alliance in schizophrenia: The role of recovery orientation, selfstigma, and insight. Psychiatry Research, 209(1), 15–20.

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121. Hamann, J., Bühner, M., & Rüsch, N. (2017). Self-stigma and consumer participation in shared decision making in mental health services. Psychiatric Services, 68(8), 783–788. 122. Yanos, P. T., Roe, D., & Lysaker, P. H. (2011). Narrative enhancement and cognitive therapy: A new group-based treatment for internalized stigma among persons with severe mental illness. International Journal of Group Psychotherapy, 61(4), 577–595. 123. Naslund, J. A., Aschbrenner, K. A., Marsch, L. A., & Bartels, S. J. (2016). The future of mental health care: Peer-to-peer support and social media. Epidemiology and Psychiatric Sciences, 25(2), 113–122. 124. Slade, M., Amering, M., Farkas, M., Hamilton, B., O’Hagan, M., Panther, G., … Whitley, R. (2014). Uses and abuses of recovery: Implementing recoveryoriented practices in mental health systems. World Psychiatry, 13(1), 12–20. 125. Ben-Zeev, D. (2014). How I stopped fearing technology-based interventions. Psychiatric Services, 65(10), 1183. 126. Slasberg, C., Beresford, P., Schofield, P., & Harlow, E. (2013). The increasing evidence of how self-directed support is failing to deliver personal budgets and personalisation. Research, Policy and Planning, 30(2), 91–105. 127. Sims, D., & Gulyurtlu, S. S. C. (2014). A scoping review of personalisation in the UK: Approaches to social work and people with learning disabilities. Health and Social Care in the Community, 22(1), 13–21. 128. Chaudoir, S. R., Dugan, A. G., & Barr, C. H. I. (2013). Measuring factors affecting implementation of health innovations: A systematic review of structural, organizational, provider, patient, and innovation level measures. Implementation Science, 8(1), 22. 129. Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Alexander, J. A., & Lowery, J. C. (2009). Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science, 4(1), 50. 130. Bonfils, K. A., Dreison, K. C., Luther, L., Fukui, S., Dempsey, A. E., Rapp, C. A., & Salyers, M. P. (2018). Implementing CommonGround in a community mental health center: Lessons in a computerized decision support system. Psychiatric Rehabilitation Journal, 41(3), 216–223. prj0000225. 131. Morse, G., Salyers, M., Rollins, A., Monroe-DeVita, M., & Pfahler, C. (2012). Burnout in mental health services: A review of the problem and its remediation. Administration and Policy in Mental Health and Mental Health Services Research, 39(5), 341–352. 132. Braveman, P. (2014). What are health disparities and health equity? We need to be clear. Public Health Reports, 129(Suppl. 2), 5–8. 133. Braveman, P. A., Cubbin, C., Egerter, S., Williams, D. R., & Pamuk, E. (2010). Socioeconomic disparities in health in the United States: What the patterns tell us. American Journal of Public Health, 100(S1), S186–S196.

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134. Drake, R. E. (2017). Mental health shared decision making in the US. World Psychiatry, 16(2), 161–162. 135. Lipton, B. J., Decker, S. L., & Sommers, B. D. (2017). The Affordable Care Act appears to have narrowed racial and ethnic disparities in insurance coverage and access to care among young adults. Medical Care Research and Review, 1–24. 136. Sommers, B. D., McMurtry, C. L., Blendon, R. J., Benson, J. M., & Sayde, J. M. (2017). Beyond health insurance: Remaining disparities in US health care in the post-ACA era. The Milbank Quarterly, 95(1), 43–69. 137. Eliacin, J., Salyers, M. P., Kukla, M., & Matthias, M. S. (2015). Factors influencing patients’ preferences and perceived involvement in shared decisionmaking in mental health care. Journal of Mental Health, 24(1), 24–28. 138. Hitchen, S., Williamson, G. R., & Watkins, M. (2015). Personal budgets for all? Implementing self-directed support in mental health services. Action Research, 13(4), 372–391. 139. Cook, J. A., Shore, S. E., Burke-Miller, J. K., Jonikas, J. A., Ferrara, M., Colegrove, S., … Hicks, M. E. (2010). Participatory action research to establish self-directed care for mental health recovery in Texas. Psychiatric Rehabilitation Journal, 34(2), 137–144. 140. Cook, J. A., Morrow, M., & Battersby, L. (2017). Intersectional policy analysis of self-directed mental health care in Canada. Psychiatric Rehabilitation Journal, 40(2), 244–251. 141. Corrigan, P. W., Angell, B., Davidson, L., Marcus, S. C., Salzer, M. S., Kottsieper, P., … Stanhope, V. (2012). From adherence to self-determination: Evolution of a treatment paradigm for people with serious mental illnesses. Psychiatric Services, 63(2), 169–173. 142. Corrigan, P. W. (2011). The dignity to fail. Psychiatric Services, 62(3), 241. 143. Salyers, M. P., Stull, L. G., Rollins, A. L., & Hopper, K. (2011). The work of recovery on two assertive community treatment teams. Administration and Policy in Mental Health and Mental Health Services Research, 38(3), 169–180.

9 Suicide Prevention: Rising Rates and New Evidence Shape Policy Options Michael F. Hogan

9.1 Framing the Issue Suicide is the 10th leading cause of death in the United States, and the death rates are rising. Yet, investments in suicide prevention lag as do implementation of policies to reduce suicide deaths. The most recent and provocative analysis of rates and trends is by Case and Deaton [1]. They find an increasing rate of “deaths of despair” (suicide, drug overdose, alcohol poisoning) among White, nonHispanic (WNH) adults in the United States. The rate of these deaths has risen dramatically in recent years, while death rates for these conditions among Blacks and Hispanics have decreased. The increase in these deaths has driven a rare increase in WNH all-cause mortality. All-cause mortality for WNH Americans is now higher than mortality rates in other affluent Western countries. The trends documented by Case and Deaton are robust enough to demand attention. But the question of what attention remains vexing. Overall investments and commitments to suicide prevention are so insubstantial that these trends simply sharpen the question of where to invest. The challenge is magnified by the reality that suicide, although common in a

M. F. Hogan (*)  Clinical Professor of Psychiatry, School of Medicine, Case Western Reserve University, Cleveland, OH, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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large population, is a rare event. The roughly 30% increase in the overall rate of suicide since 1999 means that three or four more people in a population of 100,000 are likely to die annually. But, which three people in this large group, and what would be effective to prevent their death? Considering emerging theory about suicide and its prevention will help us to frame the issue. Recent thinking about suicide risk and pathways to suicide has moved beyond enumerating risk factors such as demographics (age, sex, race) and even beyond clinical risk factors such as mental illness and prior attempts. This is important because older approaches were not very helpful in preventing suicide; “risk factors” were not necessarily causal, often could not be modified, and resulted in very large and heterogeneous populations whose individual risk was very low. In other words, our understanding of suicide was not adequate to provide a basis for considering viable policy options. Thomas Joiner’s interpersonal theory of suicide [2] has been influential in changing thinking about suicide. Joiner theorized that suicidal thoughts and desire emerge from a combination of thwarted belongingness and perceiving that one is a burden to others. Further, he concluded that thoughts of or even the desire for suicide are not sufficient to result in death by suicide; one must acquire the capability to kill oneself—both overcoming one’s natural fear of death and acquiring the means to do so. Joiner’s theory helps explain why suicide is relatively rare among the many people who have thoughts of suicide, consider it or even make a plan; suicide is difficult to consider and to accomplish. His theory also provides a framework for evaluating policy options. Changing the conditions that may lead many people to think about suicide (for example, the millions of WNH individuals distressed by declining well-being) is effective but difficult. However, if tools can identify those with high risk and help manage this risk, implementing them makes sense. Research has begun to uncover patterns in how individuals move from thoughts of suicide to self-harm. Klonsky and May [3] propose a “threestep theory” of suicide. They examined how individuals might progress from thinking about suicide (ideation) to more intense consideration, to an actual attempt. Klonsky and May identify factors that are relevant in this third stage (for example, the availability of means of self-harm such as possession of a firearm). Their work confirms that most individuals with ideation never engage in self-harm, and that relatively few individuals who engage in less serious self-harm (e.g., cutting oneself ) progress to serious suicide attempts. This suggests more accurate ways to predict the risk of suicide (e.g., having

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suicidal thoughts plus access to lethal means and a plan indicates more risk much more distinctly than simply having suicidal thoughts). Millner and colleagues [4] conducted structured interviews with individuals with a recent attempt, to identify “pathways” to suicide attempts. They found that individuals making a suicide attempt had initial suicidal thoughts one to five years prior to the attempt. This suggests that there is considerable time to engage suicidal individuals in care, if their suicidality is known. They also found that, while individuals eventually moved quickly from ideation to action (a median lapse of only two weeks between thinking specifically about the self-harm event that they acted on, and initiating the attempt). These developments in understanding suicide do not mean that efforts to change the social conditions likely to foster suicidal thoughts should be abandoned. However, since these broad approaches are very challenging to accomplish, the emerging theory suggests that efforts to identify and intervene with individuals at elevated risk should be a priority. Despite the impact of suicide, availability of improved interventions and increased attention, investments in suicide prevention are very limited. For example, the major national program is the National Suicide Prevention Lifeline. However, federal support is less than $10m/year annually. Until 2017, there was no national program to prevent suicide among adults (where most of the suicide burden exists) outside of efforts focused on veterans and military members. The twenty first Century Cures Act authorized such a program, and $10m was invested in 2017. Additionally, there is limited accountability for suicide in health care, with no national measures for health plans, and no timely reporting of deaths for patients receiving health care with the exception of those who die by suicide in a hospital or immediately on discharge. While the most basic elements of a national suicide prevention infrastructure exist, they are underpowered and insufficient to reduce rising rates of death.

9.2 Questions Because of suicide’s impact, the development of new knowledge and momentum for prevention, the question of whether suicide prevention merits greater attention and investments is timely. In addition to the question of whether to do more, there is a tension in the suicide prevention field about priorities. A major challenge is finding the balance between “upstream” prevention efforts like strengthening social connectedness among youth, and

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“downstream” efforts to improve detection and intervention for individuals who are actively at risk.

9.2.1 What Are the Patterns and Trends in Suicide? Identifying the key policy questions for suicide prevention requires some understanding of patterns of suicide. There were 44,193 deaths by suicide in 2014 [5]. While remaining the 10th leading cause of death, the number of suicide deaths increased 51% since 1999, when there were 29,199. From 1999 to 2014, the rate increased from 10.5 to 13.4 deaths per 100,000 population. Thoughts of suicide are relatively common; the Substance Abuse and Mental Health Services Administration reported that an estimated 9.3 million adults reported having suicidal thoughts in 2013 [6] while 2.7 million adults reported making a plan for suicide and 1.3 million made an attempt in 2012 [7]. The Centers for Disease Control reports there were 505,000 documented intentional, self-inflicted injuries in 2015 [8]. Thus, the vast majority of people who think of suicide do not harm themselves, and the great majority of those who harm themselves do not die by suicide. Patterns of suicide by age reveal that suicide claims many more men than women although the differences have narrowed somewhat in recent years. In 2014 there were 33,113 suicide deaths by males and 9860 by females; the ratio was 3.6 to 1. In 1999, the ratio of male to female deaths was 4.5 to 1. Rates of suicide are lower among young people (with only 425 deaths of children 10–14 in 2014), and rates rising rapidly beginning in adolescence and continuing to rise somewhat through the age span [9]. However, because overall death rates are much lower for young people, suicide is more prominent as a cause of death among young people and is the second leading cause of death among adolescents and young adults aged 25–34 [10]. Suicide’s prominence as a substantial cause of death among young people contributes to its economic impact. Shepard and colleagues [11] estimated the cost of suicide at $85b (2013 dollars). The cost is driven by the “indirect” impact of lost productivity, for example, years of productive life lost. They estimated another $8b in costs for nonfatal suicide attempts; a higher proportion of these costs are direct costs of medical treatment. These estimates may not adequately capture the total impact of suicide, for example, the effect on survivors in terms of increased depression and complicated grief—both risk factors for suicide.

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9.2.2 Do We Know Enough About Preventing Suicide to Justify Action? The study of suicide (suicidology) has emphasized understanding risk factors and patterns and trajectories of those at risk of suicide. Until recent years, this work led to better understanding of risks, but few findings that were deployed to prevent attempts or deaths. In part, this is because correlates of suicide (for example, higher rates in males than females) may not be causal and are therefore not helpful in focusing prevention efforts. Many factors correlated with higher risk (male sex, age, ethnicity) are linked weakly with risk. Until 1999, there was no national strategy for suicide prevention in the US. Part of Surgeon General David Satcher’s focus on mental health, the initial strategy [12] was a tangible sign that suicide prevention was important. The strategy recommended 10 national goals for suicide prevention and was shaped significantly by the success of a 1990s United States Air Force (USAF) effort. The USAF program emphasized a population-wide public health approach, with emphases on leadership accountability, reducing the stigma of seeking help, and supports to members at stressful times such as following disciplinary action. During the initial period of active implementation and oversight, the USAF was successful in reducing suicide rates in the USAF by about 40%. However, following initial implementation, rates rose again. Evaluation showed that the impact of the program depended on continuous leadership emphasis [13]. Thus, the results raised questions about investments needed to sustain success in a population-based effort, and about generalizability to populations outside the military, where reduced cohesion and less ability to reach community populations could affect success. The goals of the initial national strategy were broad and diffuse, with an emphasis on the community-level and public health-oriented approaches that had shown some success in the USAF effort. The strategy proved helpful in providing focus for the suicide prevention field. However, despite the Surgeon General’s imprimatur, few resources were dedicated to implementation. The subsequent increase in suicide suggests the strategy’s impact on suicide itself was limited; it helped the suicide prevention field evolve, but implementation efforts were insufficient to impact rates of suicide. Almost two decades after publication of the first national strategy, a basic suicide prevention infrastructure has been developed and more is known about effective interventions but needed actions have not been taken to scale. The major national effort is the National Suicide Prevention Lifeline (a hotline reached via 1-800-273-TALK). The Lifeline, operated by the Mental

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Health Association of New York City, works through a network of about 160 local and statewide call centers to answer crisis calls, provide support, and where feasible connect callers to care. Experience with the Lifeline has shown that many people at risk of suicide will call to talk to a counselor, and that they find calls helpful in resolving suicidal crises [14]. Participating local/statewide centers meet Lifeline standards for training and response time, but only token financial support is provided by the national center. Because of this and because of limited state and local support for crisis care including crisis call centers, the Lifeline is constantly seeking call centers to maintain and expand the network. Another national effort to expand suicide prevention capabilities was the 2004 Garrett Lee Smith Memorial Act (GLS) which targeted youth suicide. The act was sponsored by Senator Gordon Smith, whose son had died by suicide. The legislation established grant programs for states and tribal nations, and campus suicide prevention projects at colleges and universities, with annual expenditures of about $45m. Evaluation of the program [15] found that suicide rates in communities with grant programs were reduced, but the impact was limited to the target population (youth 10–24) and results were not sustained beyond the grant period; findings that also hint at the need for scaling up of the effort. A Suicide Prevention Office was created in SAMHSA in 2006, along with a resource center (Suicide Prevention Resource Center) to encourage the field and provide technical assistance focused largely on GLS grantees. However, combined funding for the lifeline and resource center is under $15m per year. The emphasis to date on building a modest infrastructure and on grantfunded programs implies that the broad actions of national scope that would be needed to reduce the rate of suicide have not yet occurred. We will examine the question of whether the field has evolved sufficiently to warrant investment in the Evidence section of this chapter.

9.2.3 Do Patterns of Suicide Among Recipients of Health Care Suggest Targeting These Settings for Prevention Activities? Evidence from successful suicide prevention efforts (for example, the Air Force, GLS grantees) suggest that intervening with a population requires the ability to reach individuals in that population who are at elevated risk. If there are patterns of suicide among healthcare users, focusing health care

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on suicide prevention may be effective. This depends first on whether there are feasible, effective actions to prevent suicide that can be implemented in healthcare settings. Data is emerging on patterns of suicide in health care, and they strongly indicate patterns of risk among healthcare services users. Since mental illness increases risk of suicide, examining rates of suicide among those who use mental health services is a starting point. About a fifth of all those who die by suicide had a recent (past 30 days) visit to a mental health professional [16]. A number of state mental health systems beginning with Kentucky have cross-walked records of those receiving public mental health services with state death records. These data show that about 20% of those dying by suicide received services in state mental health systems [17–19]. On average, about 2% of citizens receive service annually in these systems. So, suicide rates are substantially elevated, suggesting both that risks are high in this population and also that ordinary mental health care does not provide sufficient protection from suicide risk. Data are also starting to emerge on suicide rates of individuals receiving other healthcare services. About 45% of those who died by suicide saw a physician in the month before they died [16]. The patterns may suggest that people made medical visits because they were troubled by some health or behavioral problem and did not find relief. An approach to detecting and managing suicidality that is compatible with primary care could save many lives. Rates of suicide are also high among people who made emergency department visits. Ahmedani and colleagues [20] found that 37% of individuals in large health plans who died by suicide had an ED visit in the prior year, without a diagnosis of mental illness. This means risks are significantly elevated for people who use emergency care, suggesting these facilities as a locus for intervention. Among the highest rates of suicide found anywhere occur in individuals discharged from inpatient psychiatric care. In 1998 the Joint Commission issued an alert on suicide in inpatient psychiatric units [21]. Since that time, much has been done to improve safety inside hospitals, including the expectation to remove “loopable” objects where individuals might attempt to place a ligature. Suicide within hospitals, while unacceptable, is relatively rare. The Joint Commission reports receiving about 80 reports of such deaths annually. However, a far bigger issue is deaths after discharge. Chung and colleagues [22] conducted a meta-analysis of studies examining suicide after inpatient care. They found rates of suicide among individuals discharged

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from psychiatric care 44 times the global suicide rate in 2012. While other data suggests the risk is highest in the days after discharge [23], the Chung study finds that risks remain high for months and even years after discharge. The authors conclude that “a more universal approach to suicide prevention might focus on periods of high risk but that extends for periods of years” [22, p. E6]. The data also suggest that psychiatric hospitalization, a standard intervention for those at very high risk, may only be protective while individuals are hospitalized, and that care after discharge is essential. Looking across the full range of healthcare settings, the Ahmedani paper [20] examined suicide and healthcare visits in a number of large health systems, finding that 83% of those who died had healthcare contacts in the year prior to death. This suggests that health care organizations could serve as a platform for preventing suicide among their members, just as membership in the Air Force provided a nexus for action. The data also confirm that a majority of those dying by suicide had a recent visit, suggesting a missed opportunity to detect and intervene.

9.2.4 Are Greater Investments in Community-Wide and “Upstream” Prevention Efforts in Order? A focus on community-wide prevention efforts has shaped the suicide prevention field. The success of the USAF program and the subsequent emphasis on community-wide approaches in the national strategy and in GLS grants were major factors in creating support for community-wide efforts. These approaches present a policy challenge. They are consistent with the logic and methods of public health, and evaluations of the USAF effort as well as of the GLS grant program have shown success. But these efforts have not been sustained or brought to scale. The pattern is somewhat similar with respect to programs that seek to build resilience of youth, as a means to prevent suicide. Preventing problems through early, broad interventions is desirable. But, do we have data on the feasibility and effectiveness of such “upstream” efforts?

9.2.5 What Can Be Done to Reduce Lethal Means of Suicide? Since restricting means of self-harm reduces suicide, understanding patterns in those means is relevant to considering prevention strategies. In the United

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States, firearms have long been the most common method of suicide and are used in about half of all suicide deaths [24]. Feasible means to increase gun safety in the context of political and cultural resistance to gun control are thus challenging interventions to consider. Following firearms, asphyxiation (from hanging, for example) and poisoning (often via medication overdoses) are the next most frequent means. Together, these three methods account for over 90% of suicide deaths [24]. Deaths by overdose may be classified as suicide, or not. The dramatic recent increase in overdose deaths, especially from opiods, adds urgency and complexity to the task of suicide prevention. Steps to prevent suicide and to reduce addiction and overdose deaths may be complimentary (as in the case of promoting pro-social behavior among children) or may compete (as in the case of allocating treatment resources unless programs are capable of both addiction treatment and suicide prevention). (Issues and challenges in addressing the opioid epidemic are considered further in Chapter 10.)

9.3 Evidence A wide array of actions to prevent suicide are possible. A threshold issue is whether greater overall investment in suicide prevention is warranted. Looking at a range of health conditions, Insel [25] compared research investments and Disability Adjusted Life Years (DALYs—an aggregate measure of years lost to disability and early death) attributable to those conditions. He found that research spending on suicide lagged far behind investments in other high-burden mental health conditions (depression, anxiety, schizophrenia) while research investments into every mental health condition were below a regression line comparing total NIH spending per DALY. The pattern is similar for prevention and treatment of these conditions. Specific investments in suicide prevention, outside of efforts limited to the military and veterans in the Department of Defense and Veterans Administration (VA) respectively are very limited. They include surveillance activities at the Centers for Disease Control and programs at SAMHSA (including the lifeline, resource center, and grant programs that target youth, and recently adult suicide). The magnitude of suicide burden is very large compared to investments to prevent it. It is clear that more should be done in suicide prevention. But what actions are likely to be effective? What priorities for suicide prevention are scalable? And finally, is there now readiness for broader action on suicide?

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9.3.1 The Wars in the Middle East, and Suicide Among Military Members and Veterans, Have Raised the Profile of Suicide Wars have served to galvanize attention to mental health. This was true with World War II, where the high impact of neuropsychiatric problems on the military highlighted the scope of these problems and had a profound effect on American psychiatry [26]. Similarly, following the Vietnam war, the prevalence of post trauma mental health problems drew attention to the significance of psychological trauma, and focused the VA on mental health issues. As the United States entered a prolonged period of conflicts in the Middle East beginning with the Kuwait war, the problem of suicide among active military members and especially among veterans drew national attention. The major results of this attention were development of large-scale research efforts (primarily in the Army) to better predict suicide risk, and development of suicide prevention programs in the VA. The major finding from the research effort to date is that “big data” analyses are effective in identifying groups of individuals with greatly elevated risk. Algorithms applied to the substantial amounts of data available about service members (for example, demographics and healthcare histories) were able to identify a subgroup of individuals with a risk of suicide following psychiatric hospital discharge almost 15 times higher than the risk for all those being discharged [27]. This information is certainly sufficient to inform post-hospital care for individuals with such levels of risk. However, the levels of suicide risk for all individuals following hospitalization, coupled with new data on available interventions, suggest that anyone in this highrisk group should have specific supports during care and following discharge. The VA suicide prevention efforts are more robust than those in most healthcare organizations; major elements include designated suicide prevention staff at every VA medical center, and a protocol used by the suicide prevention and mental health staff to identify and support veterans with elevated risk [28]. The VA has greatly expanded staffing of its Veterans Crisis Line; investments in this program are substantially greater than for the lifeline. The VA hotline is accessed via the national lifeline, where callers are instructed to “please press 1” if they are a veteran or calling about a veteran, and are then transferred to dedicated VA call centers in Canandaigua, NY since December 2016 in Atlanta, GA and since June 2018 in Topeka, KS. Staff at these centers answer crisis calls nationally from veterans, and also provide live chat, crisis text support and coordination with local emergency

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services for individuals in “imminent crisis” such as an actual suicide attempt. The VA indicated in 2016 that there had been over 67,000 such emergency dispatches to interrupt an imminent suicide event since the service was launched in 2007 [29]. There has been no definitive evaluation of suicide prevention for veterans. With over 20 million individuals who have served—most of whom do not use VA health services—the US veteran population is large and dispersed. A recent report summarizing veteran suicide statistics by state revealed that patterns mirror those in the general population, adjusting for the fact that 90% of veterans are male: as with the general population, veteran suicides increase with age, with most individuals dying by suicide being 50 or over; there are higher rates in Western, sparsely populated states; the age adjusted suicide rate among veterans was about 20% higher than among nonveterans; and firearms were used in two thirds of suicides, a slightly higher rate than for nonveteran male suicide deaths [29]. Although overall rates of veteran suicide do not differ markedly from those in the general population, the VA has been widely criticized for inadequate efforts, with news reports emphasizing that 20 veterans a day die by suicide. The policy implication of these patterns is that while public concerns have increased a focus on suicide prevention within the DOD and VA, most veterans are not connected to VA services, and therefore prevention of veteran suicide overall depends on efforts beyond the VA. Since there is not an adequate suicide prevention infrastructure in the United States, it is possible that reducing veteran suicide rates may depend on increasing and improving overall suicide prevention efforts in a fashion that reaches veterans who do not use VA services.

9.3.2 Renewed Energy and an Updated Strategy A decade after the initial national strategy, the Obama administration created the National Action Alliance on Suicide Prevention in 2010. The alliance has catalyzed development of the suicide prevention field, building on what has been learned since the initial strategy. The work of the alliance’s Research and Clinical Care Task Forces illustrate progress. The research task force, led by the National Institute on Mental Health (NIMH), evaluated current knowledge and recommended new research priorities [30], resulting in a number of research grants funded by the NIMH.

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The clinical care task force focused on improving health care for people at elevated risk of suicide. Targeting healthcare settings was appropriate given data on the large percentage of suicides with a nexus to health care and new evidence about effectiveness of suicide prevention in health care. In particular, success of the Henry Ford Health System’s “Perfect Depression Care” program [31] drew attention. The program was a systematic quality improvement effort within the mental health division at Henry Ford. Motivated by the Institute of Medicine’s “Quality Chasm” report [32] the effort sought to make psychiatric care error free. It was not conceived as a suicide prevention program, but leaders decided that preventing suicide would be an appropriate “stretch goal,” relevant as a measure of perfection. In the first few years of implementation, the Henry Ford team reduced suicide among mental health clients by about 75%, and sustained this progress for multiple years [33]. The task force considered the experience at Henry Ford, the USAF effort and a project to reduce suicide among individuals with serious mental illness in a managed care program in Maricopa County (Phoenix) Arizona. The task force also considered new treatment strategies for people at risk of suicide. Its report [34] emphasized that successful suicide prevention efforts had been systematic efforts for populations under care and identified new clinical resources for detecting risk and treating people at risk of suicide. The task force described an approach to identifying and caring for individuals at risk of suicide in healthcare services (“Zero Suicide”) emphasizing a systematic approach, a focus on leadership and culture change, and use of newly tested treatment and clinical management strategies. The task force report influenced the new National Strategy for Suicide Prevention, released by Surgeon General Regina Benjamin [35]. The revised strategy included a new goal: to establish suicide prevention as a core responsibility of healthcare services. The revised strategy also echoed the task force report in emphasizing the need for mental health services for individuals at risk for suicide to focus specifically on interventions that target suicide: “In the past, it was believed that appropriately treating underlying conditions (e.g., mood disorders, substance abuse) would remove the risk for suicide. However, this is not always the case. A growing body of evidence suggests that suicide prevention is enhanced when specific treatments for underlying conditions are combined with strategies that directly address suicide risk” [35, p. 50].

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9.3.3 Suicide Prevention in Healthcare Settings We will review the development of, and evidence for, efforts in healthcare organizations in some detail. The work of the clinical care task force has evolved quickly into the Zero Suicide model for health care which is being implemented in a growing number of healthcare settings. There is also new research evidence on tools to detect and manage suicide. We will first review the evidence on tools that have enabled suicide prevention in healthcare settings, and then discuss the status and preliminary effectiveness of systematic Zero Suicide approaches. Screening Evolving understanding of suicide risk based on Joiner’s formulation of how individuals progress to suicide suggests that if people can be identified during an often-protracted period of elevated risk, intervention may be possible. There is accumulating evidence that people will acknowledge suicidal thoughts if asked about them during a healthcare visit. And since most people who die by suicide had such visits before dying, screening may identify many at risk. A large study by Simon and colleagues [36] makes this point. The Simon study took advantage of widespread use of the PHQ-9 screening questionnaire in a number of large health system, to examine subsequent suicide rates in relation to responses to a screening question (“within the last two weeks, have you had thoughts of ending your life, or feeling that you would be better off dead?”). Among the 84,418 individuals who responded to this question, there were 46 suicides in the follow-up period; 63% were among the minority (23%) of individuals who had acknowledged thoughts of suicide, with a significant relationship between frequency of suicide thoughts and subsequent suicide deaths [36]. One of the suicide screening tools that is used in many settings is the Columbia Suicide Severity Rating Scale (C-SSRS), developed initially for use in depression treatment trials [37]. Evaluation of the C-SSRS showed it also was able to determine clinically significant points at which a person may be at risk for an attempt [38]. Screening for suicide risk is imperfect, just as other widely used health screening tools (e.g., cholesterol levels) fail to predict every future health

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event, or when they will occur. Some individuals who have progressed far on their own suicide pathway may refuse to answer or give false answers. However, the evidence is clear that simply asking about suicidal thoughts will identify many people at risk. The feasibility of screening has now been demonstrated in large organizations such as Parkland Medical Center, which screens in all of its inpatient and outpatient settings [39] as well as efforts in specialty behavioral health settings and primary care. Since positive screens must lead to intervention a second question is whether interventions that are feasible in ordinary healthcare settings are effective. Brief Interventions with Suicidal Individuals Are Effective A number of brief interventions for people at elevated risk of suicide are demonstrating effectiveness. Since the interventions are brief, they may be more feasible to implement. One of the first such tools is the safety planning intervention [40]. Safety planning is a relatively brief (30–45 minute) intervention that uses cognitive-behavioral techniques to help individuals identify things that bring on or intensify suicidal thoughts or feelings, and provides them with a range of actions to manage these feelings. Such actions may include talking to friends, calling a hot line, removing means of selfharm from one’s environment or contacting a professional. Safety planning may be done by credentialed professionals, but also by trained paraprofessionals or others. The approach is diffusing rapidly, in part because it is common sense compared to use of the now-discredited “no-harm contract” in which people at risk are asked to promise to not harm themselves. Bryan and colleagues [41] compared use of a modified safety planning approach (crisis response planning) with no-harm contracts in a group of Army members with risk of suicide and found crisis response planning reduced suicide attempts. A logical and effective intervention for people at elevated risk of suicide is to reduce the means of self-harm available to them, especially means that they identify. This is a specific element of safety planning. Experiments have not isolated and tested this approach for patients at risk in healthcare settings, but there is good evidence for its effectiveness. Population studies have consistently shown that reducing dominant means of self-harm reduces overall suicide rates [42]. Additional evidence comes from settings where

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means reduction has been a central strategy of systematic clinical approaches to suicide prevention in health care [43]. A final effective brief intervention is “caring contacts”: personal contact to individuals at elevated risk via calls, letters, postcards, or texts. This approach is logical given the isolation that is a contributing factor in suicide. One of the earliest studies showing effectiveness of caring contacts was Mutto’s [44] study in which individuals with suicide risk were randomized to groups receiving simply usual care or usual care with periodic letters expressing support and concern. Suicide attempts were reduced in the intervention group. The evidence now supports many forms of caring contacts [45]. A recent cost-effectiveness study [46] finds caring letters were both more effective than usual care and less expensive given reduced healthcare costs attributable to reduced suicide attempts. This same study found that caring contacts via phone calls and cognitive-behavioral therapy were also effective at a cost substantially less than a generally accepted threshold for adoption ($50,000 per year of productive life saved). The convergence of evidence on the effectiveness of brief interventions coupled with the feasibility and effectiveness of screening suggests a policy approach encouraging use of these approaches in healthcare settings where people at elevated risk of suicide can be identified, including emergency departments, inpatient and community behavioral health programs, and primary care settings. Since suicide prevention has generally not been accepted yet as a core responsibility of healthcare systems, steps to highlight suicide prevention as a healthcare priority are necessary. Establishing accountability measures for healthcare organizations and health plans is also necessary. Organizations delivering improved suicide care have developed clinical pathways with required actions built into electronic medical records (for example, a positive screen requires completion of a safety plan, and makes follow-up calls standard after missed appointments). These clinical workflows will need to be available as part of the standard record if the work is to proceed to scale, Reimbursement for effective brief interventions including safety planning and follow-up contacts is also necessary; clarifying billing codes that will pay relevant providers e.g., psychiatric inpatient programs or emergency department for caring contacts is especially important. More standard approaches to screening plus brief interventions in emergency departments would be helpful in relieving emergency room “boarding,” in which patients are detained for hours or days, often because they are

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deemed too suicidal to be discharged, while an inpatient bed is not available. Hospitalizing patients with suicidality remains a common practice although the evidence of its effectiveness is mixed. Clarifying which approaches to suicide care are appropriate for individuals with different needs (for example, screening and brief interventions with outpatient care vs. hospitalization) requires additional study. Direct Treatment of Suicidality Is Effective Within the last 10 years evidence has also converged on the effectiveness of psychotherapies directly targeting suicidality (that is, helping individuals at high risk to cope effectively with thoughts or feelings of suicide). These approaches recognize that suicide is not merely secondary to a mental disorder, but rather a distinct condition that should be directly addressed. All the therapies found effective involve teaching of and practice with skills of self-management. The treatments found effective in controlled trials include dialectical behavior therapy [47], cognitive therapy for the prevention of suicide attempts [48] and collaborative assessment and management of suicidality [49]. Several international studies have also provided evidence for brief psychological interventions specific to suicide prevention. A Danish study compared subsequent deaths by individuals who had received brief therapy in regional clinics specifically for individuals who had harmed themselves with a comparison group that did not receive such care. Rates of suicide as well as alcohol-related and other violent deaths were reduced for those who received psychosocial care [50]. A Swiss team developed and tested a brief intervention for people who had attempted suicide. The Attempted Suicide Short Intervention Program—ASSIP—is a three-session psychotherapy aimed at establishing an early and strong therapeutic relationship, and directly changing suicidal behavior. Results included an 80% reduction in suicidal attempts for patients receiving the treatment compared with usual care [51]. The favorable results achieved in these trials suggest that simply treating an underlying mental disorder and hoping that suicidality will resolve is no longer adequate. However, establishing access to targeted psychotherapies will be very challenging. Training programs for mental health professionals generally do not now address managing suicidal patients [52]. Additionally, current incentives have resulted in limited availability of psychotherapy compared to medication treatment. Treatment planning and utilization

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management guidelines should require that treatment for patients with suicide risk should focus explicitly on assistance with managing suicidality, as well as addressing other mental health challenges.

9.3.4 Zero Suicide Model: A Systematic Approach to Suicide Prevention in Health Care Following the action alliance’s clinical care task force report, several healthcare organizations (Centerstone—a large community mental health organization in Tennessee, and the Institute for Family Health—a large network of community health centers in New York) collaborated to develop and implement the Zero Suicide model beginning in 2013 with support from the resource center. The model incorporates the clinical activities for which there is evidence, discussed above, within a framework also emphasizing leadership, training, and quality improvement. The added value of a systematic approach had been demonstrated in the Henry Ford successes, as well as results of a national evaluation in the United Kingdom, which found that systematic approaches to suicide prevention were more effective than single elements [53]. The Zero Suicide model proved feasible to implement. Based on the efforts at Centerstone and the Institute for Family Health, the resource center developed tools to help other organizations implement, including a website at www.zerosuicide. com. The resource center also conducted implementation workshops (“Zero Suicide Academies) where teams of staff charged with implementation in a healthcare organization could learn about the approach and develop initial implementation plans. By early 2018, about 20 of these academies had been conducted involving over 200 organizations. Other healthcare organizations are implementing Zero Suicide, including 170 mental health clinics in New York as part of a Medicaid quality improvement project and robust implementation efforts in the Kaiser Permanente system. Early results are encouraging. Unpublished results from Centerstone and the Institute for Family Health showed that both reduced levels of suicide; in Centerstone’s population of individuals with serious mental illness, suicide rates over a 3-year period were reduced over 50% from baseline to a rate similar to that of the general population [54]. At the Institute for Family Health, a network of community health centers serving a safety net population, suicide rates were also reduced over a two-year period by over

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50% from baseline, to a level well below the general population rate for the region [55]. The Zero Suicide approach to suicide prevention in healthcare settings was promoted by SAMHSA in its youth suicide grant program starting in 2014, and in grant announcements aimed at implementing the national strategy starting in 2015. These announcements drew visibility to the approach. In 2016, The Joint Commission released a broad guidance on suicide prevention to its accredited organizations [56]. Since the commission is the leading accreditor of hospitals, which dominate the healthcare landscape, this Sentinel Event Alert was influential in increasing visibility of suicide prevention as a responsibility of healthcare organizations, and of the tools and methods of Zero Suicide, which was mentioned prominently in the alert. In 2017, the Congress authorized and appropriated modest funding for the first general adult suicide prevention program. This allowed SAMHSA to issue an announcement seeking proposals for implementation of zero suicide in health systems; three five-year grants were awarded, while five additional grants were awarded to implement aspects of the national strategy with an emphasis on Zero Suicide. There have not yet been a definitive study of the impact of Zero Suicide on suicide deaths or attempts. The NIMH issued a special call for research proposals on improving suicide care and Zero Suicide. A number of NIMH research grants were funded in response to this announcement, substantially expanding and focusing practical suicide prevention research efforts. There are also substantial implementation efforts in other countries including the UK, the Netherlands, Australia and New Zealand. It is clear that suicide prevention activities in healthcare organizations, including Zero Suicide, have a great deal of momentum. At the same time, the progress is only preliminary. Only a fraction of healthcare organizations is engaged, there has not been an endorsement of “suicide care” by Medicare or Medicaid, and health care faces major challenges in political, quality, access, and cost realms. Given rising rates of suicide, the concentration of deaths among healthcare users, the research evidence on effectiveness of interventions, and the early data suggesting success of Zero Suicide, a smart policy approach is to continue and expand these efforts. This implies not just continued efforts at SAMHSA but commitments within the Department of Health and Human Services. Efforts should establish suicide prevention as a healthcare priority, clarify financing for effective interventions such as caring contacts, and develop measurement strategies.

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9.3.5 Systematic Reduction of Lethal Means Any discussion of suicide prevention must consider the evidence that reducing the availability of means of self-harm—especially when a particular means is dominant—actually reduces suicides. Some evidence comes from experiences in reducing poisonous fertilizer use, replacing potentially lethal cooking coal gas with natural gas and studies of the impact of bridge barriers [57]. Of relevance to the United States, where firearms are the dominant means of suicide, is a study examining the impact of a policy instituted in Israel. In response to a pattern of service member suicides with their service weapon when off duty, the policy required storage of service weapons on base when soldiers were off duty [57]. In this example and in all the “means reduction” efforts described here, the policy changes resulted not just in reductions in suicide from the restricted method, but overall reductions in the suicide rate for the populations under study. However, the knowledge that most suicide deaths in the United States are by firearms is unlikely to result in widespread restriction of firearms. Longstanding values about firearms ownership embodied in the Constitution’s Second Amendment, and effective advocates to advance these values, are simply too powerful to be overridden by suicide prevention considerations. In response, the American Foundation for Suicide Prevention, the largest suicide prevention group in the United States, is initiating a much more focused approach: collaboration with gun sellers to present information on suicide and suicide prevention (for example, the lifeline phone number) to every buyer of a weapon. A second approach to restricting lethal means makes it a central activity of clinical efforts to prevent suicide among people in healthcare settings. For example, restricting lethal means is a central element of the safety plan intervention and of the Zero Suicide approach. (For further discussion of gun violence and gun control, see Chapter 7 in this Handbook.)

9.3.6 Evidence for Broad Community Approaches to Suicide Prevention Public health oriented suicide prevention measures have been central to thinking in the suicide prevention field. The approach of systematically identifying and then reducing risks in a population (risks of violence, for example) is well established. As described by WHO [58] the public model emphasizes: (1) surveillance of the problem in the population, (2) identifying modifiable factors that increase or decrease risk, (3) designing interventions to accomplish these aims, and (4) implementing, evaluating and

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adjusting the approach. The relevance of this approach to suicide prevention was established via the success of the Air Force program that explicitly used the public health model as the framework of its efforts. Knox and colleagues concluded: “A community-wide suicide prevention programme aimed at decreasing stigma, enhancing social networks, facilitating help seeking through system level policy changes, and enhancing understanding of mental health in the community was associated overtime with a 33% risk reduction for completed suicide” [13, p. 1379]. While a success, its effectiveness does not necessarily mean the approach can be feasibly deployed to prevent suicide on a broad basis. Knox and colleagues noted that “The key lessons derived from this community based intervention may be particularly adaptable in selected workplace contexts that are more tightly organised and provide or coordinate human services for their employees or in settings with naturally occurring social networks” [13, p. 1379]. While results suggest that suicide prevention for entire populations might be feasible and effective, limitations of the effort as a national model were also apparent. The successes of the program occurred during the active implementation and close monitoring of the effort. With changes in leadership and emergence of new priorities for the Air Force, suicide rates increased after 1998 although most policies and procedures remained in place. This implies that time limited, grant-funded programs—the major approach now used in the United States for community-based suicide prevention—are unlikely to lead to sustained success. Additional actions would be needed to sustain prevention efforts under routine community conditions. A second potential limitation to generalizing from the Air Force results is that providing a network of close support within a military organization (with a chain of command, where members and their families often live on or very near to bases—in other words a “bounded population”) is a much less challenging proposition than attempting to detect and intervene with suicide risk in open communities with diverse populations, loose social networks and varying norms. The Suicide Prevention Resource Center promotes use of the public health model as a core approach to suicide prevention [59], and the approach is typically reflected in state plans for suicide prevention. However, implementation is often unfunded and conducted by volunteers at the community level, virtually assuring that the approach will be underpowered to affect such a complex and often “invisible” problem as suicide. The other existing suicide prevention effort which has incorporated elements of the public health approach is the Garrett Lee Smith (GLS) grant program focused on preventing suicide among 10–24-year-olds. As we have

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noted, the program reduced youth suicide rates [13]. However, in a finding similar to the USAF experience, suicide rates were reduced only among the population targeted by these efforts and were not sustained after the grantfunded programs ended. The policy implication of the Air Force and GLS programs is that population-based efforts must be focused, powered and sustained to make a robust impact. To date in the United States, no such effort exists. But the success of these programs does suggest that testing the effectiveness of community-wide approaches on a broad scale is an important step toward scaling up a national effort. A possible test of this approach is underway in Colorado, where the Resource Center, with participation from the Centers for Disease Control and a suicide-focused Injury Control Research Center at the University of Rochester, is collaborating with state and local officials to design and test a statewide approach to suicide prevention [60].

9.3.7 Evidence for “Upstream” Interventions to Prevent Suicide Perhaps the most desirable approach to prevention is to intervene early and on a population basis, to reduce risk factors while increasing p ­ rotective factors for the condition being addressed. But, as we have discussed, this is much easier said than done in suicide prevention. Population rates of suicide are so low that interventions must be very broadly deployed to have an impact. This is not an argument against such interventions; the cost of youth suicide is estimated at about $1.8m/case [11] while rates of costly self-harm are much higher among young people. But it illustrates the difficulty of achieving support for and successfully deploying these programs. We do not have definitive trials of upstream suicide prevention interventions for youth since not enough has been done to fund such studies. However, there is promising evidence about feasibility and effectiveness of a suicide prevention program for schools. The Sources of Strength program is a “whole school” approach (i.e., the focus is on all students in a school, not just a subset with higher risk). It attempts to increase protective factors through student peer leaders who are trained to address factors that reduce suicide risk including identification of trusted adults, creating expectations that youth will ask adults for help to suicidal friends, and increasing coping methods. An evaluation of the program found that it was effective on these dimensions [61].

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There are several policy implications for addressing suicide behavior, especially among youth, via upstream prevention activities. First, because of the burden of youth suicide, investments to deploy interventions more broadly and to test effectiveness across larger populations are warranted. Second, because of the burden associated with youth suicide, broad prevention initiatives such as those focused on school safety should include elements that explicitly target suicide prevention. These initiatives should be favored over general efforts that do not target or have not been tested in preventing suicide.

9.4 Conclusion In this chapter we have reviewed the substantial and increasing impact of suicide, the recent and promising development of the suicide prevention field, and evidence that suggests policy directions. We will now summarize these recommendations. Since the first national strategy was released in 2000, the impact of suicide and our understanding of how to prevent it have both increased. The suicide rate has increased 29% since 1999, leading to over 44,000 deaths nationally in 2014. A basic, if “thin,” infrastructure for suicide prevention has been put in place, including hotlines for civilians and veterans, a resource center promoting prevention, an office at SAMHSA that distributes grants for youth and adult prevention efforts and leads an interagency steering committee including most major relevant federal agencies, and robust efforts in the VA and Department of Defense. In 2010, a national alliance was created to provide stewardship of suicide prevention efforts; the alliance has helped the field mature. Evidence on the effectiveness of various approaches, most notably those in healthcare settings, has begun to accumulate. Finally, public awareness of suicide has grown. The recent decision to install netting and barriers at the Golden Gate Bridge, debated without action for decades, illustrates changing attitudes. The first policy direction emerging from this review is derived from the increased and substantial burden of suicide, and the growth in knowledge that makes effective prevention efforts possible. Current suicide prevention efforts should be sustained, especially those that lead to additional knowledge (for example, research projects funded by NIMH) and improve the field (for example, the alliance). An example of an opportunity to improve existing programs is represented by legislation sponsored by Sen. Orrin

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Hatch to designate a currently unassigned “X11” national three-digit phone number for the lifeline. Second, community-based public health-oriented efforts to prevent suicide have demonstrated their effectiveness when appropriately focused and scaled. However, aside from efforts within certain sectors (for example, the Air Force) current programs in the United States are grant funded, modest, and not sustainable. The need is to bring these efforts to scale. As a first step to determine how to accomplish this and to refine the parameters for ongoing efforts, we need a demonstration and evaluation of a suitably scaled public health-oriented suicide prevention program. The effort now underway in Colorado [61] to develop and test a comprehensive statewide effort provides such an opportunity and should be supported. Partly because of the burden of youth suicide and because youth efforts have received greater attention in the United States because of the GLS program, there is considerable interest in preventive interventions that can prevent or reduce youth suicide and suicide attempts. There are many prevention programs that target various problems including delinquency, substance abuse, and bullying. However, these have not been evaluated systematically to determine whether they prevent suicide. Suicide prevention should be evaluated as an outcome of youth prevention programs, and programs with effectiveness in suicide prevention should be prioritized. Restricting means of suicide is effective in saving lives. This is true with respect to individuals at risk but also true at a population level when there is a dominant and readily available means of suicide. In the United States, the dominant means of suicide is firearms. Support for the American Foundation for Suicide Prevention’s voluntary effort to promote suicide prevention at the point of gun sales is indicated. Most suicide deaths are among people enrolled in and recent users of healthcare services. Effective methods to identify people at elevated risk and effective interventions to keep them alive have been tested. The evidence is recent, but strong. Additionally, a systematic approach to suicide prevention in healthcare organizations (Zero Suicide) is starting to be widely implemented, and evaluations of its effectiveness—to complement evaluations within innovator programs—is underway. Support for suicide prevention in healthcare organizations—including grant programs at SAMHSA and research studies at NIMH—should continue. In particular, expanded funding for the national adult suicide prevention program authorized by the twenty first Century Cures Act is needed. Barriers to providing good suicide care such as the absence of national healthcare measures, and poor

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reimbursement for some crucial activities such as post discharge caring contacts should be addressed. Innovation in suicide prevention in health care has come from researchers, isolated healthcare organizations and from the suicide prevention field—not from mainstream health policy and financing organizations. Therefore, endorsement of suicide prevention as a core goal of healthcare organizations is needed by, for example, The Centers for Medicare and Medicaid Services. There clearly is the potential to reverse increases in the suicide rate. Evaluations of youth suicide prevention efforts, the USAF’s public health-oriented approach, Zero Suicide in health care, specific suicide prevention activities, dedicated treatments and of systematic means reduction have all shown substantial effectiveness. The problem is no longer the absence of evidence, but rather questions of political will and of commitment to scale up what works. It is time to do this work.

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NSDUH Series H-47, HHS. Publication No. (SMA) 13-4805. Rockville, MD: Author. Available at 2k12MH_Findings/2k12MH_Findings/NSDUHmhfr2012.htm#sec3-1. Accessed March 7, 2018. 8. Centers for Disease Control. (2016). Self-harm all injury causes nonfatal injuries and rates per 100,000 for 2015. Available at broker.exe. Accessed March 7, 2018. 9. Centers for Disease Control. (2015). Data brief 241: Increase in suicide in the United States, 1999–2014. table.pdf#1. Accessed March 11, 2018. 10. National Institute on Mental Health. (2017). Suicide is a leading cause of death in the United States. Available at Retrieved March 7, 2018. 11. Shepard, D. S., Gurewich, D., Lwin, A., Reed, G. A., & Silverman, M. M. (2015). Suicide and suicidal attempts in the United States: Costs and policy implications. Suicide and Life-Threatening Behavior. sltb.12225. 12. Department of Health and Human Services, Center for Mental Health Services, Office of the Surgeon General. (2001). National strategy for suicide prevention: Goals and objectives for action. Rockville, MD: Author. Available at Accessed March 8, 2018. 13. Knox, K. L., Litts, D. A., Talcott, G. W., Feig, J. C., & Caine, E. D. (2003). Risk of suicide and related adverse outcomes after exposure to a suicide prevention programme in the US Air Force. British Medical Journal. https://doi. org/10.1136/bmj.327.7428.1376. 14. Gould, M. S., Munfakh, J. L., Kleinman, M., Lake, A. M. (2012, February 1). National Suicide Prevention Lifeline: Enhancing mental health care for suicidal individuals and other people in crisis. Suicide and Life Threatening Behavior, 42(1), 22–35. 15. Walrath, C., Garraza, L., Reid, H., Goldston, D., & McKeon, R. (2015, March). Impact of the Garrett Lee Smith youth suicide prevention program on suicide mortality. American Journal of Public Health, 105(5), 986–993. https:// 16. Luoma, J., Martin, C., & Pearson, J. (2002, June). Contact with mental health and primary care providers before suicide: A review of the evidence. American Journal of Psychiatry, 159(6), 909–916. ajp.159.6.909. 17. Suicide Prevention Resource Center. (2015). Surveillance success stories: Kentucky. Waltham, MA: Education Development Center. Available at http:// Accessed March 8, 2018. 18. Hiance-Steelesmith, D. L., Fontanella, C. A., Sweeney, H. A., Campo, J. V. (2015, April 15–18). Behavioral health service use among suicide decedents in the

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public behavioral health system. Poster presented at 48th Annual Conference of the American Association of Suicidology. Atlanta, GA. 19. Suicide Prevention Resource Center. (2015). Surveillance success stories: Vermont. Waltham, MA: Education Development Center. Available at http://www.sprc. org/sites/ Accessed March 9, 2018. 20. Ahmedani, B., Simon, G., Stewart, C., Beck, A., Waitzfelder, B., Rossom, R., … Solberg, L. I. (2014, June). Health care contacts in the year before suicide death. Journal of General Internal Medicine, 29(6), 870–877. 21. The Joint Commission. (1998). Sentinel event alert, issue 7: Inpatient suicides: Recommendations for prevention. Oak Brook, IL: Author. Alert retired; Available at update.aspx?k=721&b=&t=4&pg=3. Accessed March 5, 2018. 22. Chung, D. T., Ryan, C. J., Hadzi-Pavlovic, D., Singh, S. P., Stanton, C., & Large, M. (2017, July 1). Suicide rates after discharge from psychiatric facilities: A systematic review and meta-analysis. JAMA Psychiatry, 74(7), 694–702. 23. Goldacre, M., Seagroatt, V., & Hawton, K. (1993, July 31). Suicide after discharge from psychiatric inpatient care. Lancet, 342(8866), 283–286. 24. Centers for Disease Control. (2017). Suicide and self-inflicted injury: Fast stats. Available at Accessed March 1, 2018. 25. Insel, T. (2014). The anatomy of NIMH funding. Available at https://www.nimh. Accessed January 22, 2018. 26. Grob, G. N. (1991). From asylum to community: Mental health policy in modern America. Princeton, NJ: Princeton University Press. 27. Kessler, R. C., Warner, C. H., Ivany, C., Petukhova, M. V., Rose, S., Bromet, E. J., … Ursano, R. (2015, January 1). Predicting U.S. Army suicides after hospitalizations with psychiatric diagnoses in the Army Study to Assess Risk and Resilience in Servicemembers (Army STARRS). JAMA Psychiatry, 72(1), 49–57. 28. Department of Veterans Affairs, Department of Defense. (2013). VA/DoD guidelines for the assessment and management of patients at risk for suicide. Washington, DC: Author. Available at Accessed March 1, 2018. 29. Office of Mental Health and Suicide Prevention, Department of Veterans Affairs. (2017). Suicide among veterans and other Americans 2001–2014. Washington, DC: Author. Available at docs/2016suicidedatareport.pdf. Accessed March 7, 2018. 30. National Action Alliance for Suicide Prevention: Research Prioritization Task Force. (2014). A prioritized research agenda for suicide prevention: An action plan to save lives. Rockville, MD: National Institute of Mental Health and the

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Research Prioritization Task Force. Available at Accessed March 6, 2018. 31. Coffey, C. E. (2007, April). Building a system of perfect depression care in behavioral health. Joint Commission Journal on Quality and Patient Safety, 33(4), 193–199. 32. Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: The National Academies Press. 33. Coffey, M. J., Coffey, C. E., & Ahmedani, B. K. (2015, March). Suicide in a health maintenance organization population. JAMA Psychiatry, 72(3), 294–296. 34. National Action Alliance for Suicide Prevention: Clinical Care & Intervention Task Force. (2012). Suicide care in systems framework. Washington, DC: Author. Available at Accessed March 5, 2018. 35. US Department of Health & Human Services, Office of the Surgeon General and the National Action Alliance for Suicide Prevention. (2012). National strategy for suicide prevention: Goals and objectives for action: A report of the U.S. Surgeon General and of the National Action Alliance for Suicide Prevention. Washington, DC: Author. Available at pubmed/23136686. Accessed March 7, 2018. 36. Simon, G., Rutter, C., Peterson, D., Oliver, M., Whiteside, U., Operskalski, B., & Lundman, E. J. (2013). Does response on the PHQ-9 Depression Questionnaire predict subsequent suicide attempt or suicide death? Psychiatric Services, 64(12), 1195–1202. 37. Oquendo, M. A., Halberstam, B., & Mann, J. J. (2003). Risk factors for suicidal behavior: Utility and limitations of research instruments. In M. B. First (Ed.), Standardized evaluation in clinical practice (Review of Psychiatry Series (2) 2, Oldham, J. M., Riba, M. B. Series Editors). Washington, DC: American Psychiatric Publishing. pp. 103–130. 38. Posner, K., Brown, G., Stanley, B., Brent, D., Yershova, K., Oquendo, M., … Mann, J. J. (2011). The Columbia-Suicide Severity Rating Scale: Initial validity and internal consistency findings from three multisite studies with adolescents and adults. American Journal of Psychiatry, 168(12), 1266–1277. https://doi. org/10.1176/appi.ajp.2011.10111704. 39. Roaten, K., Johnson, C., Genzel, R., Khan, F., & North, C. S. (2018). Development and implementation of a universal suicide risk screening program in a safety-net hospital system. Joint Commission Journal on Quality and Patient Safety, 44, 4–11. 40. Stanley, B., & Brown, G. (2012). Safety planning intervention: A brief intervention to mitigate suicide risk. Cognitive and Behavioral Practice, 19(2), 256– 264.

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41. Bryan, C. J., Mintz, J., Clemans, T. A., Leeson, B., Burch, S. T., Williams, S. R., … Rudd, M. D. (2017). Effect of crisis response planning vs. contracts for safety on suicide risk in U.S. Army soldiers: A randomized clinical trial. Journal of Affective Disorders (212), 64–72. 42. Mann, J. J., Apter, A., Bertolote, J., Beautrais, A., Currier, D., Haas, A., … Hendin, H. (2005). Suicide prevention strategies: A systematic review. Journal of the American Medical Association, 294(16), 2064–2074. https://doi. org/10.1001/jama.294.16.2064. 43. Coffey, E. Personal communication. September 16, 2013. 44. Motto, J. A., & Bostom, A. G. (2001). A randomized controlled trial of postcrisis suicide prevention. Psychiatric Services, 52(6), 828–833. https://doi. org/10.1176/ 45. Luxton, D., June, J., & Comtois, K. (2013). Can postdischarge follow-up contacts prevent suicide and suicidal behavior? Crisis, 34(1), 32–41. 46. Denchev, P., Pearson, J. L., Allen, M. H., Claassen, C. A., Currier, G. W., Zatzick, D., & Schoenbaum, M. (2017, January 1). Modeling the cost-effectiveness of interventions to reduce suicide risk among hospital emergency department patients. Psychiatric Services, 1(69), 23–31. 47. Linehan, M. M., Comtois, K. A., Murray, A. M., Brown, M. Z., Gallop, R. J., Heard, H., … Lindenboim, N. (2006). Two-year randomized controlled trial and follow-up of dialectical behavior therapy vs therapy by experts for suicidal behaviors and borderline personality disorder. Archives of General Psychiatry, 63(7), 757–766. 48. Stanley, B., Brown, G., Brent, D., Wells, K., Poling, K., Curry, J., … Hughes, D. S. (2009). Cognitive behavioral therapy-for suicide prevention (CBT-SP): Treatment model, feasibility, and acceptability. Journal of the American Academy of Child and Adolescent Psychiatry, 48(10), 100513. 49. Comtois, K. A., Jobes, D. A., O’Connor, S. S., Atkins, D. C., Janis, K., Chessen, C. E., … Yuodelis-Flores, C. (2011, September). Collaborative assessment and management of suicidality (CAMS): Feasibility trial for next-day appointment services. Depression and Anxiety, 28(11), 963–972. https://doi. org/10.1002/da.20895. 50. Birkbak. J., Stuart, E. A., Lind, B. D., Qin, P., Stenager, E., Larsen, K. J., … Erlangsen, A. (2016, September 22). Psychosocial therapy and causes of death after deliberate self-harm: A register-based, nationwide multicentre study using propensity score matching. Psychological Medicine, 46(16), 3419–3427. 51. Gysin-Maillart, A., Schwab, S., Soravia, L., Megert, M., & Michel, K. (2016). A novel brief therapy for patients who attempt suicide: A 24-months follow-up randomized controlled study of the Attempted Suicide Short Intervention Program (ASSIP). Plos Medicine. Published online March 1, 2016. Available at Accessed March 8, 2018. 52. Schmitz, W. M., Allen, M. H., Feldman, B. N., Gutin, N. J., Jahn, D. R., Kleespies, P. M., … Simpson, S. (2012). Preventing suicide through improved

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training in suicide risk assessment and care: An American Association of Suicidology Task Force report addressing serious gaps in U.S. mental health training. Suicide and Life Threatening Behavior, 42(3), 292–304. https://doi. org/10.1111/j.1943-278x.2012.00090.x. 53. While, D., Bickley, H., Roscoe, A., Windfuhr, K., Rahman, S., Shaw, J., … Kapur, N. (2012). Implementation of mental health service recommendations in England and Wales and suicide rates, 1997–2006: A cross-sectional and before-and-after observational study. Lancet, 379(9820): 1005–1012. 54. Stoll, B. Personal communication. September 26, 2017. 55. Little, V. Personal communication. September 26, 2017. 56. The Joint Commission. (2016). Sentinel event alert, issue 56: Detecting and treating suicide ideation in all settings. Oak Brook, IL: Author. Available at http:// Accessed March 9, 2018. 57. Barber, C. W., & Miller, M. J. (2014). Reducing a suicidal person’s access to lethal means of suicide: A research agenda. American Journal of Preventive Medicine, 47(3S2), S264–S272. 58. World Health Organization. (2018). The public health approach. Geneva. Available at en/. Accessed March 8, 2018. 59. Suicide Prevention Resource Center. (2018). Suicide prevention: The public health approach. Waltham, MA: Author. Available at: default/files/migrate/library/phasp.pdf. Accessed March 7, 2018. 60. Caine, E., & Hindman, J. (2018). The rationale for developing comprehensive approaches to suicide prevention and one state’s experience with this approach. Archived webinar by Injury Control Research Center for Suicide Prevention. Available at Accessed March 9, 2018. 61. Wyman, P. A., Brown, H., LoMurray, M., Schmeek-Cone, K., Petrova, M., Yu, Q., … Wang, W. (2010, September). An outcome evaluation of the sources of Strength prevention program delivered by adolescent peer leaders in high schools. American Journal of Public Health, 100(9), 1653–1661. https://doi. org/10.2105/ajph.2009.190025.

10 How Should the United States Respond to the Opioid Addiction and Overdose Epidemic? Keith Humphreys and Harold A. Pollack

10.1 Framing the Issue The United States is grappling with a public health crisis that is now of greater severity than was the HIV/AIDS epidemic. Millions of Americans are addicted to prescription and illicit opioids, which damages their health and quality of life, including by putting them at high risk of overdose. In 2016, 64,000 Americans died from drug overdose (78% from opioids) [1], more than were killed in combat during the entire Vietnam War, more than four times the number of Americans lost due to homicide, and almost twice the number lost to motor vehicle crashes. These deaths continue to rise, with approximately one-third of US drug overdose fatalities now involving cheap, potent, and lethal compounds such as fentanyl [2], a synthetic opioid analogue for which deaths more than doubled in 2016 from 9803 to This work is supported by a grant from the National Institute on Drug Abuse R01 DA03463401. Keith Humphreys was also supported by grants from the Veterans Health Administration and the Stanford Neurosciences Institute. Sean Mackey and Bryce Pardo provided helpful feedback on drafts of this chapter.

K. Humphreys (*)  Veterans Affairs and Stanford University Medical Centers, Palo Alto, CA, USA H. A. Pollack  School of Social Service Administration, The University of Chicago, Chicago, IL, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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Fig. 10.1  Overdose deaths involving opioids, United States, 2000–2016 (Source CDC/ NCHS, National Vital Statistics System, Mortality. CDC WONDER, Atlanta, GA: US Department of Health and Human Service, CDC; 2016.

20,145. The rise of fentanyl reflects underlying changes in the illicit opioid market toward increased use of cheap, highly potent synthetic products [3] (Fig. 10.1). The 2008 Mental Health Parity and Addiction Equity Act, 2008 Medicare Improvement for Patients and Providers Act, and the 2010 Affordable Care Act dramatically expanded access to substance use disorder treatment [4]. Yet, National Survey of Drug Use and Health data indicate that only about 26% of individuals who satisfy screening criteria for substance use disorders are currently receiving treatment. Meanwhile, many substance-addicted individuals are incarcerated, which may exacerbate their risk for overdose or contracting infectious disease [5]. This adds up to a massive challenge to healthcare delivery, social service, public health, and public safety systems. Clinicians and policy makers’ attention naturally turns to the healthcare system as one component of a coordinated response. This chapter describes the evolution and status of the US addiction treatment system, the services it provides, and their evidence of effectiveness. As the opioid epidemic differs from most prior drug epidemics in being partly spawned by the healthcare system itself, this chapter also examines policies that can lessen the extent to which the healthcare system accelerates the epidemic through its own actions.

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Some historical understanding of the addiction treatment system is required to understand how the United States provides services for opioidaddicted individuals. The account that follows is not comprehensive, but rather focuses on three particular historical features that shape the system today.

10.1.1 Historical Point #1: Drug Addiction Treatment Emerged from Outside the US Health Care System and Barriers to Integration Continue Today Most specialties in health care, for example cardiology, oncology, and pediatrics, emerged organically from medicine. Those endeavors were thus never subject to significant debate about whether they were a legitimate part of medicine, whether they should be active, collaborating components of the healthcare system, or whether they should command some of the resources society devotes to health care. These practice specialties were also subject to the rigors of general clinical care, required (albeit inconsistently) to demonstrate health benefit [6]. However imperfectly, evidence in these specialties underpinned significant mechanisms of professional training, certification, reimbursement, and legal liability that in turn promoted important basic standards of care and professional legitimacy. Drug addiction treatment in contrast emerged from outside health care, being created by three entities: the criminal justice system, the social welfare system, and peer-led mutual help organizations. Each of these entities usefully contributed to drug addiction treatment. But these origins did not help drug addiction treatment to become integrated with health care, adequately financed, or seen as a legitimate medical endeavor. The criminal justice system’s leading role in managing drug addiction is longstanding. Many addictive substances are illegal, as are many behaviors associated with addiction such as public intoxication or driving under the influence. Beyond that, addicted people are disproportionately likely to engage in other crimes (e.g., petty theft and/or prostitution to support drug purchases). Finally, in some historical eras, addiction outbreaks occurred among disenfranchised groups who were already the subject of suspicion and hostility. It therefore seemed logical to many policy actors that the best response to addiction was tough policing and stern punishment. The hard edge of the criminal justice approach was to impose prison terms in response to use; the softer edge was to combine incarceration with treatment, as was done by at the federal “narcotics farms” in Lexington and

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Forth Worth until the early 1970s [7] and which is carried on today in many correctional treatment programs. In health care, some level of coercion is occasionally seen as acceptable for conditions that have high risk of causing harm to self or others and for which some affected individuals may avoid treatment (e.g., schizophrenia comorbid with suicidality, tuberculosis). Addiction shares these features and thus would have been subject to some coercion in any event, but this tendency was likely amplified by its association with the criminal justice system. Social welfare providers (e.g., The Salvation Army) drew on cultural/religious conceptions of addiction as a sin or human weakness. Focused often on some of the poorest and most troubled people in the country, social welfare providers nobly offered shelter, safety, and support to addicted people. Clergy and volunteer counselors were the hubs of activity, whereas physicians and nurses played at most supporting roles because social welfare was largely implemented outside the formal healthcare system. A third important strand of the field emerged from mutual help organizations operated by people with lived experience of addiction, with Alcoholics Anonymous and Narcotics Anonymous being the most prominent examples. Careful research on these organizations indicates that they are effective for many individuals [8]. They do not however provide medication, test for and manage common medical comorbidities (e.g., HIV, Hepatitis C), or have strong referral links to the healthcare sector. Because they are outside of the healthcare system, they, like the social welfare system, confirm in the minds of many policy makers and much of the general public that neither medical expertise nor significant funding is needed to respond to drug addiction. As happens in many other “path-dependent fields,” this particular history provides powerful incentives for actors inside and outside the addiction field to keep this system at arms-length from general medical care. Strict confidentiality regulations (e.g., 42 CFR Part 2) originally intended to protect patients from the prying eyes of law enforcement were created and resulted in further segregation of addiction treatment from mainstream health care. For example, a primary care doctor cannot necessarily talk to addiction treatment specialist or even know that a shared patient has received such care. Funding streams with associated regulations and performance standards— most prominently the substance abuse treatment and prevention block grant administered by the federal Substance Abuse and Mental Health Services Administration—were established apart from the main healthcare financing mechanisms of private insurance, Medicaid and Medicare. Even when

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addiction treatment became reimbursable through insurance, many specialty addiction treatment providers failed to develop the information technology and other organizational capacities to bill insurers. In their segregated fiscal environment, substance use disorder treatment programs were not subject to accountability and quality improvement practices that increasingly dominate in general medical care. The sector lagged behind in developing accountability systems required by many payers— including the ability to measure clinical outcomes and to credibly link such outcomes to provided services. For its part, the medical establishment was largely happy to have drug addiction defined as someone else’s problem, so that they could focus on “real diseases.” Despite the prevalence and health damage caused by addiction and other substance use disorders, less than 1% of US physicians specialize in addiction. Even in the midst of the opioid epidemic, most medical and nursing students receive limited training in how to identify and treat substance use disorders. The Veterans Health Administration (VHA) was an exception to these trends that built addiction care services and funding directly into medical facilities, perhaps because veterans are the one group of addicted people whom most Americans seem not to look down on or at least felt obligated to care for. But the sector’s norm was isolation. The separation of drug addiction treatment from health care as a whole has led to poor coordination of care, chronic shortages of medically trained personnel, weak quality improvement mechanisms, under-funding, and a decoupling from research findings on how to improve outcomes. Funding limitations have also reduced the interest of pharmaceutical companies in developing medications for addiction as it is not clear who would buy them or who would prescribe them. Salaries within the field are often poor, reducing staff morale and quality, and producing high rates of burnout and turnover.

10.1.2 Historical Point #2: The Country Has Not Fully Decided Whether Drug Addiction Treatment Is Medicine or a Forum for Character and Life Transformation The “three parents” of the system did not see addiction fundamentally as a medical condition, but as a product of character defects, including sociopathic values, irreligiosity, and selfishness. This reflected how Americans at the time thought about addiction, and how many indeed still do.

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This legacy is evident in what many stakeholders expect of addiction treatment. Addiction treatment is often evaluated by how well it reduces crime or other problem behaviors more than by how well it improves patient health and well-being. Enforcement language is correspondingly pervasive: Drug addiction treatment is the only part of health care in which urine and blood tests are referred to as “dirty” versus “positive,” for example. Some treatment programs, including most therapeutic communities, state that their purpose is to “stop criminal thinking” and “instill self-discipline.” Mutual help organizations, who contribute many counseling staff to programs, speak of recovery as a life transformation and not just the absence of drug use. No reasonable person can be against human beings leading responsible lives. Crime reduction and improved pro-social behaviors are also to be celebrated and people who have been victimized by addicted individuals have particular reason to care about them [9]. Further, many addicted people regret having let down or harmed other people (e.g., having been a neglectful or even abusive parent), and restitution can be very important in these instances both to heal damaged relationships and to bring the addicted person peace. Yet the idea that successful addiction treatment must involve character transformation leads to high expectations not generally present in health care, for example that treatment will not only remove the addiction but also lead the person who receives it to have a happy marriage, cohesive family, and gainful employment. This is a lot to ask of an underfunded, understaffed set of human services.

10.1.3 Historical Point #3: The Drug Addiction Treatment Field Has Been Repeatedly Handicapped by Culture War Issues Drug policy is an area into which many other cultural issues have been poured, including long-term American debates about race, crime, poverty, faith, family, who went to Woodstock, and who went to Vietnam. Cultural and moral issues are legitimately at play in public policy debates within free societies [10], but the unusual intensity and endurance of culture war debates surrounding drugs has led to missed opportunities to reduce morbidity and mortality. For example, what might have been hailed as a prize-worthy breakthrough for most illnesses has instead been mired in controversy for more

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than fifty years: methadone maintenance. It was the first medication that produced dramatic improvements in the functioning of people with drug addiction, and was the first medical treatment to recognize that, as a chronic condition, addiction would often need long-term, potentially indefinite, care. Unfortunately, drug policy being drug policy and the 1960s being the 1960s, methadone maintenance immediately became an object of US culture wars. Some people, many of them associated with the criminal justice, social welfare and mutual help group communities that had birthed the field, objected to providing medication during treatment for addiction. Activists and commentators from a range of political perspectives found other reasons to criticize methadone maintenance [11]. If not for the strong support of President Nixon and his drug policy director, Dr. Jerry Jaffe, who steered substantial federal resources into methadone maintenance, it might never have gotten a foothold. But it ended up burdened by excessive regulations, stigma, and poor insurance coverage, all of which made it less available and attractive to patients than it might have been. Ambivalence about methadone often translated into under-dosing and unrealistic limits on duration of care, a situation that quite literally cost lives. More lives were likely lost in the 1980s and 1990s because the United States was slower than other developed nations (e.g., The United Kingdom, where Prime Minister Margaret Thatcher embraced harm reduction) to adopt syringe exchange while the HIV epidemic rapidly spread among people who inject drugs. Indeed, an amendment named for Senator Jesse Helms still bans federal funding for needle exchange today [12]. Given this history—not to mention the pursuit of punitive policies to address the crack cocaine and methamphetamine epidemics—it’s hardly surprising that divisions within the public community over treatment and harm reduction often take an absolutist turn. That these divisions are unsurprising makes them no less destructive. Public health systems remain bedeviled by sometimes vicious debates between those favoring “treatment” and those favoring “harm reduction.” In addition to producing bad feeling among people who might fruitfully collaborate, this schism produces fights over funding, staffing, program siting, and legitimacy. It also reduces service coordination. The ideological shouting match reflects the false assumption that treatment is about reducing drug use and harm reduction affects the damage caused by use but not the use itself. In reality “harm reduction” interventions lower drug use and “treatment” lowers harm [13]. Public health system can provide both types of

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allegedly distinct services, ranging from distribution of naloxone and sterile syringes to strengthened treatment referral and recovery services. During the Presidencies of George W. Bush and Barack Obama, culture war issues surrounding drugs cooled as bipartisan support emerged for enhancing insurance coverage for addiction treatment, supporting people in recovery, and reducing incarceration of addicted individuals [14]. A few members of President Trump’s administration have continued such efforts in a few areas [15, 16]. But prior to resigning due to misappropriation of federal funds, Health and Human Services Secretary Price denounced medication assisted treatment for opioid addiction. The President and Attorney General have endorsed a return to heavy criminal sentences including expanded capital punishment. The President has also blamed immigrants for the US drug problem. The Administration has thus tried hard to revive culture wars around drugs [17–19].

10.2 Questions Many questions arise from this historical context to shape the current policy agenda. Here, we will focus on four key questions about treatment and broader policy issues that shape current practice and future prospects.

10.2.1 What Health and Social Services Exist for People with Opioid Use Disorders? Several key distinctions need to be made when considering services currently available for opioid disorders. Some services target drug use per se, other high-risk behaviors (e.g., sharing injection equipment), or are acute measures designed for emergencies or when the patient needs brief, intensive care (e.g., detoxification and stabilization, naloxone administration).

10.2.2 What Is Known About the Effectiveness of These Services? When considering effectiveness, the multiple forms of opioid treatment must be distinguished including detoxification and stabilization, various medication treatments, outpatient behavioral health therapies, therapeutic communities, self-help groups, and syringe exchange programs.

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10.2.3 What Is Known About Supply-Side Efforts to Reduce the Inappropriate Use of Opioids? Much of the attention in controlling opioid use focuses on the individual end-stage user but promising interventions at other points in the supply chain also need to be considered including interventions with prescribers, producers, and importers of drugs, as well as with pharmacies.

10.2.4 How Is Medicaid—Fast Becoming a Dominant Payer for Addiction Services—Best Designed to Serve Individuals with Substance Use Disorder? In many states, substance use disorders were excluded from Medicaid coverage resulting in an underdeveloped array of services to meet the needs of the opioid population. These exclusions were changed in recent years by the 2008 Mental Health Equity and Addiction Parity Act and the 2010 Affordable Care Act. Medicaid is fast becoming a dominant payer for addictionrelated health and social services. The looming policy issues here are twofold: (1) how are Medicaid benefits best designed to meet the needs of opioid users and (2) how effective are the new health insurance exchanges in serving this population.

10.3 Evidence We focus now on services for people with opioid use disorders and review the evidence as to whether they reduce opioid use and associated harm to self and others.

10.3.1 Services for People Who Have Opioid Use Disorders Officially, services often target drug use, other high-risk behavior, or an immediate crisis (e.g., overdose). Regardless of what their official purpose is, services often produce other changes, a key example being “harm reduction” programs that provide an entry into treatment that leads to halted or reduced drug use. We thus now discuss health and social services as a group rather than dividing them into putatively competing camps.

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Drug use is typically only one of several problems people with opioid use disorders face. Polydrug use (including alcohol) is common among people being treated for opioid use disorder. Indeed at least a third of “opioid overdoses” are in reality due to simultaneous use of opioids and alcohol, opioids and benzodiazepines, or all three [20, 21]. Clinical programs should be sensitive to this reality, lest dangerous substance use patterns persist or become worse even as opioid use is decreasing. For example, some methadone maintenance patients engage in heavy alcohol consumption that increases rather than decreases as treatment continues [22]. Cannabis and tobacco use are also prevalent among opioid use disorder treatment patients, with correspondingly higher risk of smoking-related disorders. Medical, social, legal, and psychiatric problems are also prevalent among people who have opioid use disorders, and these life problems do not necessarily diminish when opioid addiction is successfully treated [23]. In one recent study [24], 30% of criminal-justice-supervised individuals seeking treatment for opioid disorders screened positive for moderate to severe depression. To return to the subject of setting reasonable expectations for addiction treatment, if all the problems of opioid use disorder patients are going to be resolved, treatment has to be resourced appropriately to offer a range of services beyond those focused on addiction per se.

10.3.2 Effectiveness of Services for People with Opioid Use Disorders Services Evidence about the effectiveness of services for people with opioid use disorders has been growing in recent years. Current evidence suggests that some service elements are more effective than others. Here, we review the evidence for the main components of the opioid use disorder treatment continuum. Detoxification and Stabilization In response to emergency overdoses or to voluntary admissions of individuals seeking to stop opioid use, medical staff manage the individual’s care for several days, usually in an inpatient setting. Opioid withdrawal can be safely managed medically, but in no way constitutes addiction treatment per se: The patient’s body is free of the acute effects of opioids, but the enduring neuroadaptation to chronic opioid use remains in place [25]. Most opioid users who participate in detoxification programs will engage in some level of continued opioid use afterwards. The practice of some

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public and private payers’ policy of only covering detoxification or short-stay inpatient rehabilitation is thus ill-advised [26]. Such policies are also dangerous. Detoxification reduces the individual’s tolerance for opioids, such that their prior, usual dose can induce overdose. Tight linkages to treatment after detoxification are critical, as detoxification without follow-on treatment may raise the risk of overdose even beyond what it was prior to detoxification [26, 27]. Modification of Medicaid’s Institution for Mental Disease (IMD) exclusion could permit greater Medicaid reimbursement for inpatient/residential addiction care. However, for this to be an effective policy intervention, such services and reimbursement must be linked to community resources and aftercare as is the norm for other chronic medical disorders. Individuals with opioid disorders face tolerance-reducing risks from other detoxification experiences such as spells of incarceration or institutional care [28]. Ensuring successful transitions from such settings is thus a high priority. Critical Time Interventions and other modalities may be helpful to address these challenges [29]. Recent suggestive evidence from Rhode Island indicates that provision of medication-assisted treatment in correctional settings can reduce post-incarceration fatal overdoses [30]. Opioid Agonist Therapy (OAT) OAT involves providing a less dangerous opioid to individuals who are addicted to heroin, oxycodone or other opioids. OAT involves an “agonist” medication like methadone or buprenorphine that binds to the same brain receptor as more dangerous opioids. The concept is analogous to the nicotine patch for cigarette smokers, which provides a stable nicotine level that helps the smoker abandon the destructive habit of smoking tobacco. OAT is a long-term intervention intended to substantially reduce or stop illicit drug use and drug injecting. OAT is provided with supple­ mental services, which range from medical management by a primary care physician to substantial therapeutic services focused on improving mental health and employability [31]. OAT was originally created using methadone, an opioid that over 24 hours provides a much more stable blood level than does heroin. This allows individuals to function better in their daily lives, for example hold down a job (most heroin-addicted individuals are unemployed) [32]. Buprenorphine maintenance provides an increasingly widespread second form of OAT. Although buprenorphine is somewhat chemically different

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from methadone, it’s more important distinction is regulatory. Methadone maintenance is provided in designated, highly regulated clinics, whereas buprenorphine maintenance can be provided in primary care, making it much more accessible and attractive to patients [33], particularly patients who wish to avoid the specific constraints of methadone treatment or the general environment and stigma associated with the specialty addiction treatment system. The proportion of opioid use disorder treatment programs offering buprenorphine increased from 11% in 2003 to 58% in 2015, with a near-tripling in the number of OTP clients receiving buprenorphine since 2010 [34]. Medicaid spending on buprenorphine has also rapidly increased, with almost all of the increase occurring in states that adopted ACA’s Medicaid expansion [35]. OAT is recommended as first-line treatment in clinical practice guidelines (i.e., meaning it should be offered to all patients) because it has stronger evidence of effectiveness than any other intervention for opioid use disorder [36]. The benefits are broad, including sharply reduced illicit drug use, overdose mortality, criminal behavior, and risk of contracting or transmitting infectious disease [37–40]. OAT, which is inexpensive to provide, is one of the more cost-effective investments in medicine [41]. All that said, OAT has limits like every other treatment in medicine. It may work best when combined with other interventions to address cooccurring nonopioid use or psychosocial challenges. OAT has no direct effect on other substances the person might be using. Further, although the ideal treatment length ranges from a year to a lifetime, large numbers of patients drop out (or have their treatment halted) much sooner than that. Also, as many as half of treatment-seeking people with opioid use disorder don’t want to be on any opioid. Others may be inappropriate for OAT because of a medical contraindication or because they divert and sell the medication. Care systems thus need additional options, a number of which are available as either alternatives or complements to OAT. Opioid Antagonist Medication A medication known as naltrexone blocks the action of opioids at the relevant receptor in the brain. As a result, a patient on naltrexone experiences little or no reward for using opioids. Because naltrexone is not an opioid it has no street value and concomitant need to worry about diversion. Those who start on the original formulation of naltrexone (a daily pill) often do not adhere to the treatment over time [42, 43]. The oral

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medication has mainly been effective with unusually well-organized, motivated patients with significant social capital, e.g., addicted physicians and nurses. Most addicted people living on the street are unwilling to try it and have compliance challenges when they do. However, a breakthrough occurred when naltrexone was developed as a “depot” formulation, meaning that an individual could receive an injection that would last for a month, making adherence easier. Randomized clinical trial evidence shows that this medication dramatically reduces heroin use and overdose in addicted individuals, including multiproblem patients involved with the criminal justice system [44, 45]. A further benefit of naltrexone is that it, unlike OAT, reduces the rewarding properties of alcohol. A recent clinical trial comparing extended-release naltrexone with OAT found that it was at least as good at reducing illicit opioid use and also that patients were more satisfied with it [46]. At the same time, injectable naltrexone is more expensive than OAT and its accessibility has been limited as a result. Outpatient Behavioral and Psychosocial Therapies About 90% of care for addiction occurs on an outpatient basis. The medications reviewed above are typically provided this way as are a range of psychosocial treatments that can be delivered alongside medication or as stand-alone interventions. The range of models is large (cognitive behavioral treatment, 12-step facilitation counseling, contingency management) but all rely on a clinician–patient relationship as a forum in which to convey information, teach skills, enhance motivation and facilitate behavior change. An integrative review of largely psychological/behavioral treatments found that patients were about a third more likely to have a good drug use outcome and about one-sixth more likely to have a good criminal behavior outcome than individuals not receiving treatment [47]. This is less change than is associated with medication, indicating that as a stand-alone treatment they may not be sufficient for many patients [48]. At the same time, many people with substance use disorders do not want to take prescribed medications and therefore psychological/behavioral treatment is the only option for them. Therapeutic Communities Therapeutic communities are long-term treatments which aspire to change drug use and as well as the fundamental outlook and behavior of

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individuals in many domains. They often serve individuals with criminal records, either within prison or upon release. Some quasi-experimental studies show positive results, including reduced drug use and greater likelihood of staying out of prison [49, 50]. However, the literature supports two cautions about in-prison therapeutic communities, namely that (1) they may have little effect if they are not followed by post-release services [51], and (2) they do not have evidence of being superior to high quality outpatient treatment [52]. Peer-Led Mutual Help Organizations Peer-led groups such as Narcotics Anonymous engage hundreds of thousands of individuals. They appeal to many people because they charge no fees, have no waiting lists, require no paperwork and provide much needed friendship and support for recovery (as well as for families). The potential role of these groups in responding to the opioid crisis has been understated, perhaps because they are outside the professional care system. Some professionals therefore view them with suspicion or see them as rivals [8], in part because belief in 12-step has been associated with methadone under-dosing [53], and in part due to more generic motivations (e.g., fear of a low-cost rival, desire to be at the top of a hierarchy). Notwithstanding these challenges, existing research suggests that peer self-help groups have significant benefit [54]. In addition to groups, there are peer-led residential communities, the best known one is Oxford House. A randomized trial of a diverse sample of substance use disorder patients found that over two years, Oxford House residents had dramatically higher rates of abstinence and employment than individuals assigned to usual care [55]. Syringe Exchange Services Sharing of injection equipment is a vector for multiple infectious diseases, including Hepatitis C and HIV/AIDS. Syringe exchange services provide sterile needles and other injecting equipment and offer counseling on how to reduce the risks of injection drug use (note that significant risk still remains). They also often serve as a conduit to services designed to reduce the individual’s drug use [56]. They have evidence of reducing HIV/AIDS transmission, though they have never been subject to a randomized trial [13]. Because Hepatitis C is so prevalent among intravenous drug users

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and so easily transmitted, it is less clear that such interventions (and more intensive OAT interventions) can reduce population transmissions of this disease [57]. Syringe exchange programs likely have less impact today than in the past because the policy environment has changed. When they started in the 1980s, almost all US states required a prescription to receive needles from a pharmacy and made it illegal to possess needles without a medical reason (e.g., diabetes). Almost no states continue these practices today, and many injection drug users have begun accessing clean injection equipment through pharmacies as a result [58]. As mentioned, syringe exchange programs have been hampered by culture wars around drugs. There is no empirical basis to the fear that people become injection drug users because of syringe exchange programs. Whether some individuals who are already injecting drugs persist longer because they have access to a syringe exchange programs is not known. If this happens, it may still represent reduced risk to the individual and community (e.g., 4 years of injecting while in touch with a syringe exchange service may be less dangerous than 2 years of injection while not). Syringe exchange programs can be designed with close linkages to treatments to assist participants to reduce or halt their substance use. Expanding Access to Naloxone Naloxone is a fast-acting medication that reverses the effects of opioids during an overdose, restoring breathing and allowing transfer to medical care [59]. A large number of states have responded to the overdose crisis by allowing naloxone to be administered by people other than medically trained professionals. One key group is first responders, such as firefighters and police. Because opioid users and their loved ones may be hesitant to call for help from police in the event of overdose, this sort of access expansion is likely more effective when it is combined with Good Samaritan legislation preventing prosecution of minor drug crimes in the event of an overdose emergency [60]. First responders around the United States have surely reversed tens of thousands of overdoses since they began carrying naloxone [59]. Naloxone is also being distributed to drug users and their loved ones, along with training programs on overdose recognition and response [61, 62]. Although it is hard to conduct rigorous research on such programs, the analysis that have been done suggest that these programs do

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convey useful information to participants and reduce overdose deaths in the community [63–65]. Medicaid expenditures on naloxone prescriptions for opioid use disorders increased from essentially zero in 2015 to almost $20 million in 2016, with the rapid increase reflecting the introduction of an easy-touse nasal spray. Nearly all this increase occurred in Medicaid expansion states [35]. Myriad regulatory changes have made naloxone more accessible. These include making naloxone available to everyone at the pharmacy counter (Pennsylvania and California recently, in effect, gave every state resident a prescription for naloxone by fiat) and allowing doctors to write third-party prescriptions. The VHA has started dispensing naloxone to prescription opioid patients who seem at high risk of overdose and Medicaid is covering naloxone in some states. Primary Care Interventions Because of its history, drug addiction treatment has occurred almost entirely in the specialty sectors just described, whereas most other illnesses are often identified and managed in primary care. This has dramatically limited the likelihood that people with opioid use disorders will receive care, because most of them do not access specialty treatment programs. Primary care is thus an opportunity to help a broader slice of the population with opioid use disorders. Some efforts have been made to bring drug addiction-related interventions into primary care, though not all providers have been enthusiastic about using them and also some of them have not worked well when tried. Many studies have shown that primary care doctors can reduce excessive benzodiazepine use in patients using brief in-person consultations; indeed some patients will quit simply if sent an advisory letter by their doctor [66– 68]. This is relevant to opioids because so many opioid overdoses are due to simultaneous use of opioids and benzodiazepines [21]. Mental health parity and coverage expansion provide critical tools to reimburse such consultations. The Medicaid managed care rule and Medicaid health home program also provides resources and an organizational structure to promote delivery of these services. For opioids, a number of investigators have evaluated a model known as screening, brief intervention, and referral to treatment (SBIRT). The logic is that identifying cases early will give a chance to slow progression, and,

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that low-level severity cases can be managed in primary care while more serious ones are referred to specialty care. However, most studies of this SBIRT model have been disappointing for illicit drug users [69, 70]. Screening in primary care may have value nonetheless, as a way to make it less likely a physician will prescribe a medication that has an adverse interaction with opioids. Better education of primary care physicians in how to detect and respond to opioid use disorders and better interventions for them to provide are major priorities for the field.

10.3.3 Supply-Side Efforts to Reduce Nonmedical Opioid Use The opioid epidemic is fundamentally different from the crack cocaine epidemic of the 1980s and the heroin epidemic of the 1960s and 1970s in that the healthcare system itself helped to initiate the problem by writing billions of prescriptions for opioids, driving US consumption to an historically unprecedented level [71]. This will be noted in future histories as a black eye for medicine, regulatory agencies, and the pharmaceutical industry, but in the meantime it has an important practical implication: The healthcare system has substantial power to reduce the problem on the supply side. Over-prescribing creates direct risks of opioid use disorders. It also creates indirect risk, by increasing the number of pills available for theft, sale, or diversion [3]. Interventions to reduce opioid prescribing might cause some people in pain to suffer. This possibility should be taken seriously, but also put in context. First, on average, opioids do not appear to be effective for chronic, non-cancer pain [72], and indeed, for a subset of patients, longterm opioids can induce hyperalgesia, i.e., increased pain [73]. Second, although cutting off a patient’s opioids suddenly can be dangerous or cruel, protocols for careful weaning over time can be employed to protect patients from these dangers [73]. Third, as shown in Fig. 10.2, the United States could cut its prescription opioid consumption by 90% and still be in the top 30 opioid-consuming nations on a per capita basis [71]; many nations with a bare fraction of the opioid use of the US report no higher levels of population pain, even when they have older populations. Fourth, and most importantly, the epidemic needs to be thought of dynamically rather than in static terms. The opioid addicted population has a stock (prevalence) and a flow (incidence). The stock is the people who are addicted right now. The flow is the people who move into opioid use and addiction each year. Evidence-based services should be provided to the stock, but the only way to ultimately curb the epidemic is to reduce the flow,

Source: United Nations International Narcotics Control Board


Czech Republic Slovakia

Greece Croatia Hungary

Italy Mauritius

Portugal Finland

France Slovenia

Sweden Iceland Israel


New Zealand

Norway Great Britain

Spain Luxembourg


Switzerland Australia

Belgium Austria


Germany Denmark

60000 50000 40000 30000 20000 10000 0

United States

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Fig. 10.2  Top 30 prescription opioid consuming nations, in standard daily doses/million inhabitants (Source United Nations International Narcotics Control Board)

which will require different policies, including some that could cause harm to some of the stock. For example, closing a pill mill with 1000 current customers may lead some of the 100 who were legitimate pain patients to enter the black market for OxyContin or to suffer significant pain without proper medical relief. Yet were the pill mill left to continue operating unchecked, it might addict 300 new people in the following year (and in the years after), which is an even worse outcome. Sensible and humane policy must halt this pill mill’s dangerous practices. Yet in doing so, policy makers must address the needs and well-being of current patients, for example through focused addiction treatment and best-practice pain care. Sound policy won’t be perfect and will involve unappealing tradeoffs, reflecting the tragic dimension and scale of the opioid epidemic. Pharmacist Interventions Pharmacists have specific expertise regarding opioid medications. They are a trusted information source and have personal contact with many patients who are vulnerable to opioid addiction. They are key economic actors in this market, as well. Patients typically receive information on the safe use of prescription opioids via printed instructions included with the medication. Instructions alone do not appear to reduce the risks of misuse [74], but compliance with the terms of the prescription is increased and adverse events are reduced when pharmacists actively counsel patients receiving the prescribed medication [75–77]. This of course takes time for the often-busy pharmacist, but is more likely to occur if reimbursed by insurers [78].

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CVS employed another pharmacy-centered strategy that could be more broadly emulated [79]. The company identified the 42 most prolific controlled substance prescribers out of nearly one million whose prescriptions were filled by CVS. Within the most common specialty, internal medicine, outlier prescribers averaged thirty times as many prescriptions as the average prescriber. CVS sent letters to the 42 outliers stating that some justification would be needed to continue filling these providers’ prescriptions. Remarkably, most prescribers (n = 36) did not respond or gave implausible explanations suggesting that there was no legal, clinical appropriate explanation. These prescribers were cut off from CVS pharmacies. Randomized trials of other high-prescriber interventions are now underway, so far with mixed but informative results [80]. Changing the Cost/Reimbursability of Opioids Raising the price of particular prescription opioids may shift use to less expensive medications [81–85]. A potential policy option therefore is to make riskier opioids more-costly than less-risky opioids and non-opioid medications with similar effects. Some state and federal legislators are proposing special taxes on opioids, e.g., 1 cent per milligram morphine equivalent. One would expect that these policies could somewhat reduce prescriptions for opioids, depending on who pays them (e.g., insurers vs. patients). In implementing such policies, one must be wary of shifting price-sensitive patients to cheap, higher-risk opioids however. Although valuable as a maintenance treatment for heroin addiction, the inexpensive drug methadone is a risky drug for pain, accounting for a share of overdose deaths far greater than its share of prescriptions [86]. Pricing policies that drive pain patients and/or their doctors to methadone may thus harm public health. Reimbursement lock-in is a different type of financial intervention which seeks to deter one high-risk pattern: “doctor shopping” for opioids. Many overdoses involve someone who has prescriptions from multiple prescribers [87]. Insurers can restrict a patient with many prescribers to a single provider who will write and be reimbursed for all future opioid prescriptions. Almost every state uses such programs within Medicaid. Medicare adopted this approach beginning in 2018. Lock-in programs reduce opioid provision [88]. The experience of Oklahoma [89] and Washington State [90] was positive, including reduced doctor shopping, emergency room visits, and costs.

278     K. Humphreys and H. A. Pollack Clinical Practice Guidelines and Associated Prescriber Education The new Centers for Disease Control [72] guidelines are one of many efforts to provide authoritative information to providers on how to prescribe opioids appropriately and safely. Such guidelines coupled with education can affect prescribing, although the effect is not consistent across studies [91]. Washington State workers’ compensation program issuance of a high-dose opioid guideline was followed by a reduction in prescription opioid-related deaths among enrollees [92]. On the more pessimistic end, a study of guidelines and education for primary care physicians showed no impact on risky prescribing of opioids or benzodiazepines [93]. An educational letter from the Center for Medicare and Medicaid Services informing prescribers that they were above the norm for opioid prescribing likewise had no effect on future prescribing [80]. Education may be more influential when it is perceived to affect how the provider is viewed by peers or by organizational leadership, i.e., a sense of accountability is created through informal or formal pressure. Provider education combined with new regulations concerning co-prescription of opioids and benzodiazepines substantially reduced this form of risky prescribing [94]. Referral to an educational course because of prior risky prescribing may make the course more influential on the physician’s behavior [95]. Surveys of dental professionals indicate that providers are substantially more likely to screen for substance use disorders when they perceive such interventions as valued components of their own dental roles [96]. The Opioid Safety Initiative in the VHA and the opioid prescribing change initiative of Group Health plan in Washington State [97] are other prominent examples of coupling guidelines, education and social pressure to change prescribing behavior. Restricted Prescribing Making it harder to prescribe a medication reduces its use, while often increasing to a lesser extent, prescriptions for similar drugs that are not so restricted. Tighter scheduling and monitoring of one benzodiazepine (Rohypnol) reduced overall prescribing of this class of drugs in Europe, even though some patients were switched to other benzodiazepines [98]. This exemplifies the usual finding that substitution effects are less than the decline in the restricted drug, i.e., net prescribing of the class of drug decreases [99].

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“Preferred drug lists” are one method of restricting prescribing by requiring extra approvals and paperwork for doctors to prescribe drugs not on the list. Classifying methadone for pain as non-preferred was associated with reduced methadone overdose deaths [86], presumably because prescribers shifted to preferred drugs with better safety profiles for pain patients. By adopting best-practices such as these, Medicaid and other payers can reduce opioid disorders without denying patients access to opioid medications when these are really needed. Moving drugs to a more restrictive schedule of the Controlled Substances Act can reduce prescriptions. In October 2014, the Drug Enforcement Administration moved hydrocodone combination products (e.g., Norco, Vicodin, Lortab) from Schedule III to Schedule II, producing substantial drops in prescriptions for these drugs. There was some compensatory uptick in prescriptions for opioid drugs that were less restrictively scheduled (e.g., Tylenol #3 and #4 [100]) but a national evaluation estimated a net overall decrease of about 15 million opioid prescriptions from rescheduling [101]. Prescription Drug Monitoring Programs Prescription monitoring programs (PDMPs) track data for states and make it accessible to prescribers, pharmacies, and/or other monitoring agencies. PDMPs greatly vary in how well they are resourced, their technical details, what drugs they cover, and the extent to which prescribers in the state actually use them [102–104]. PDMPs have been shown to lessen the rate of prescribing of those drugs that the program tracks [105]. Emergency room doctors in Ohio for example responded to the creation of an Internet-based PDMP by changing their opioid prescribing for 41% of patients who the system flagged as being potentially of concern [106, 107]. PDMPs can produce some substitution when prescribers decrease use of medications under the PDMP but increase use of others [108, 109]. However, the net effect appears beneficial, if modest. States with PMPs have fewer opioid poisonings, overdose deaths and treatment admissions compared to non-PDMP states [110–112]. States with stronger programs receive more benefit than those with weaker programs [104]. Pardo’s study of PDMPs indicated that programs operated by law enforcement produced larger benefits than those operated by other administrative bodies [104]. PDMPs also allow regulators to engage in proactive efforts to stem dangerous prescribing [113]. Massachusetts used PDMP data to identify 100

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prescribers who appeared to be inappropriately prescribing an addictive medication. The state sent these prescribers an advisory letter, leading to a 92% drop in their average number of prescriptions per month [114, 115]. Because some PDMPs are clunky and slow, provider uptake might be increased simply by upgrading existing systems to the level of sophistication and user experience one sees with other Internet-based services. PDMPs would also become more powerful if states routinely shared data, such that for example patients could not doctor shop undetected across state lines. Prescribers who identify irregular patient behavior through PDMPs should make every effort to engage such individuals in addiction treatment rather than simply cutting them off so as to reduce the risk that the patient will shift to heroin use. Prescription Drug Take Back Programs Many people who misuse prescription opioids get them from other people who have current or past opioid prescriptions (e.g., leftover in their medicine cabinets). Take back programs are designed to drain off the excess supply of opioids. The “take back days” that are run by law enforcement around the United States generally gather impressive amounts of medications, but much of what is turned in are not controlled substances and overall they represent a bare fraction of what is available [116, 117]. As with other forms of recycling, take backs must become a routine behavior of most Americans to achieve true population impact. Right now, these efforts are infrequent events pursued by a motivated few. Fortunately, Congress passed laws allowing this to occur and many pharmacies now allow people to legally return unused prescriptions. CVS pharmacies have significantly expanded available recycling programs in their stories. More private sector buy-in would expand the ease of doing this (e.g., if every large chain committed to having every store implement a take back program), and changes in cultural norms would also help such that take backs, like recycling soda cans, becomes “just something you do.” Tamper-Resistant/Abuse-Deterrent (TR/AD) Opioid Medication Formulations TR/AD formulations change the design and/or composition of an opioid to make misusing it more difficult (e.g., crushing it for injection or

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inhalation) [118, 119]. For example, buprenorphine can be combined with naloxone such that the former is rendered inert when not taken as directed [120]. This formulation (marketed as Suboxone) does not eliminate misuse of buprenorphine but seems to reduce it in some populations, particularly when the combination product is the form of a film rather than a pill [121, 122]. After OxyContin was reformulated in 2010 to make it more difficult to inject, its street price declined by 36% [123], indicating that opioid users found it less valuable (though still worth something, as the TR/AD protection is imperfect and some individuals find ways to defeat it) [124–127]. Other public health indicators, such as telephone calls to poison control centers, substance use disorder treatment admission, emergency room, and mortality data also suggested that the TR/AD formulation was misused far less than the original formulation [123, 128–132]. Importantly, although some of the positive studies have been funded by companies that produce TR/AD formulations, others without such support have reached similar conclusions. However, the introduction of the TR/AD OxyContin reformulation was also followed by increased prescriptions of some other non-TR/AD opioids [133]. The prescribing system is thus only as strong as its weakest link. Given that the Food and Drug Administration (FDA) has not set a policy of demanding TR/AD reformulations for all opioids, there is an element of whack-a-mole in this arena. Although the flow of new people into iatrogenically induced opioid addiction could be lessened by TR/AD formulations, some of the stock (e.g., people currently misusing prescription opioids) may respond to being switched to TR/AD medications by moving into illicit markets. Many people become addicted to prescription opioids after using medications without tampering with them—that is, using these medications exactly as directed. TR/AD formulations also do not prevent oral misuse (i.e., taking far more pills than prescribed) [125]. Doctors must be educated to this reality, and to understand the inherently limited role of TR/AD formulations in reducing opioid misuse. Current policies provide economic incentives not to develop TR/AD reformulations. A company that produces a widely misused drug gains more revenue from sales. Meanwhile, they have to undergo the costly FDA approval process to introduce the TR/AD reformulation to the market. Putting those two facts together, pharmaceutical companies are being asked to spend large sums of money to cut their own revenue. The introduction of

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the TR/AD reformulation of OxyContin by Purdue Pharma reduced sales of that opioid but increased sales of opioids made by its competitors [123]. Many policy reforms have been discussed to rearrange incentives, including public funding of TR/AD reformulations, expedited FDA review for TR/AD reformulations, extended patent protection for TR/AD reformulations, and phased removal of all non-TR/AD reformulations from the market so that companies are neither rewarded for selling products with highest potential for misuse, nor punished economically for trying to reduce misuse of their product. This latter policy would also qualify as an economic intervention on the consumer, in that TR/AD reformulations will likely be more expensive than older opioids, particularly those that have become generic. If that price difference is large, it could pose a challenge to Medicaid programs that cover long-acting opioids for patients in legitimate need (e.g., people with cancer). Targeted Enforcement Against Destructive Prescribers Roughly speaking, prescribers can be divided into three groups. The first group, which is by far the largest, are good doctors who do the right thing and should therefore be left alone. The second group are good doctors who sometimes do the wrong thing, for example by failing to reliably follow proper guidelines. This group requires further education, training, and incentives to help them prescribe safely. The third group, which is mercifully small, are doctors who intentionally prescribe opioids for non-approved or nonmedical use. Drug enforcement actions can be targeted effectively to this group. Even a small number of unethical prescribers can cause widespread harm [134]. A small group of unethical pain doctors running pill mills in Florida facilitated substantial opioid addiction and overdoses throughout the Southeastern US in the 2000s [135]. Following pill mill raids by law enforcement and the introduction of tighter regulations, Florida’s opioidrelated overdose death rate significantly decreased [135, 136]. An important point to remember is that heroin markets have been established in many cities since Florida did its initial, successful pill crackdown (2010–2011). This means that current pill mill customers can migrate to another dangerous market. It is thus especially important to link these individuals to effective treatment services in conjunction with any law enforcement action rather than arrest them or simply let them scatter to fend for themselves.

10  How Should the United States Respond to the Opioid Addiction …     283 Restrictions on Pharmaceutical Company Promotion/Influence Unlike European nations which have dramatically lower levels of opioid prescribing, the United States places few limits on the ability of pharmaceutical firms to promote their products. Industry activities to persuade prescribers to use their products include gift-giving, in person “detailing” visits, funding of research, funding of continuing education programs, funding of patient advocacy groups (usually not acknowledged) that promote the use of opioids, and funding of professional societies and clinical practice guideline development groups. Although doctors tend to resist the idea that such promotion affects them, much evidence suggests that it does [137, 138]. In the absence of preventive regulation against aggressive marketing and outsize financial influence, some governments have sued manufacturers post-hoc. Purdue Pharma pled guilty to criminal misconduct and deceptive marketing of Oxycontin and paid a $600 million dollar fine to the federal government [139]. Other lawsuits have been filed by cities, counties, and states. Whether such suits deter future misconduct (which after all can be extraordinarily lucrative) is unknown. In any event, lawsuits at most provide some compensation to victims; the more pressing question of how government can be more pro-active to limit industry influence in the first place remains largely unasked. Also unasked is the question of individual criminal liability by decision-makers whose reckless pursuit of profit resulted in enormous human misery.

10.4 Conclusion Responding effectively to the United States opioid epidemic will require simultaneously taking care of the already addicted (the stock) and reducing the incidence of addiction in the future (the flow). Effective policies exist to support both of these goals. For the millions of individuals currently addicted to opioids, there are multiple, effective healthcare options, most notably OAT and extended-release naltrexone. These can be supplemented by an array of emergency interventions (e.g., naloxone for overdose), psychological therapies and mutual help programs. Because the patient population is diverse in its needs and wants, a good healthcare system would provide an array of services that meet patients where they are and strive to improve their health. To achieve quality services requires resources and therefore Medicaid and Medicare must cover

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substance use disorder care adequately on the public side while parity regulations are rigorously enforced by government on the private insurance side. Reducing the incidence of opioid addiction requires different policies. Given the extraordinary level of opioid prescribing in the United States, the opioid epidemic will never be ameliorated solely through services for people with existing disorders; reduction in supply is paramount. Among the most promising interventions are tighter restrictions on prescribing and prescription opioids and reimbursement lock-in programs. Well-resourced PDMPs can also make a contribution. Clinical practice guidelines and education of prescribers can also be influential if accompanied by some accountability pressure. All efforts of this sort must monitor for shifting of opioid misuse from the stock of currently addicted people from one type of prescription or another (or to heroin) as well as the effect of controls on patients with a legitimate need for opioids. Policy evaluation must consider that initiatives may have different, indeed sometimes contradictory impacts, on currently addicted individuals and those who might become addicted in the future.

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126. Cicero, T. J., & Ellis, M. S. (2015). Abuse-deterrent formulations and the prescription opioid abuse epidemic in the United States: Lessons learned from OxyContin. JAMA Psychiatry, 72, 424–429. 127. Lourenco, L. M., Matthews, M., & Jamison, R. N. (2013). Abuse-deterrent and tamper-resistant opioids: How valuable are novel formulations in thwarting non-medical use? Expert Opinion on Drug Delivery, 10, 229–240. 128. Butler, S. F., Cassidy, T. A., Chilcoat, H., Black, R. A., Landau, C., Budman, S. H., & Coplan, P. M. (2013). Abuse rates and routes of administration of reformulated extended-release oxycodone: Initial findings from a sentinel surveillance sample of individuals assessed for substance abuse treatment. The Journal of Pain, 14, 351–358. 129. Cicero, T. J., Ellis, M. S., & Surratt, H. L. (2012). Effect of abuse-deterrent formulation of OxyContin. The New England Journal of Medicine, 367(2), 187–189. 130. Coplan, P. M., Kale, H., Sandstrom, L., Landau, C., & Chilcoat, H. D. (2013). Changes in oxycodone and heroin exposures in the national poison data system after introduction of extended-release oxycodone with abuse-deterrent characteristics. Pharmacoepidemiology and Drug Safety, 22, 1274–1282. 131. Coplan, P. M., Chilcoat, H. D., Butler, S. F., Sellers, E. M., Kadakia, A., Karikrishnan, V., … Dart, R. C. (2016). The effect of an abuse-deterrent opioid formulation (OxyContin) on opioid-abuse related outcomes in the postmarketing setting. Clinical Pharmacology & Therapeutics, 100, 275–286. 132. Sessler, N. E., Downing, J. M., Kale, H., Chilcoat, H. D., Baumgartner, T. F., & Coplan, P. M. (2014). Reductions in reported deaths following the introduction of extended-release oxycodone (OxyContin) with an abuse-deterrent formulation. Pharmacoepidemiology and Drug Safety, 23, 1238–1246. 133. Dart, R. C., Surratt, H. L., Cicero, T. J., Parrino, M. W., Severtson, S. G., Bucher-Bartelson, B., & Green, J. L. (2015). Trends in opioid analgesic abuse and mortality in the United States. The New England Journal of Medicine, 372(3), 241–248. 134. Strang, J., & Sheridan, J. (1997). Heroin prescribing in the “British system” of the mid 1990s: Data from the 1995 national survey of community pharmacies in England and Wales. Drug and Alcohol Review, 16, 7–16. 135. Surratt, H. L., O’Grady, C., Kurtz, S. P., Stivers, Y., Cicero, T. J., Dart, R. C., & Chen, M. (2014). Reductions in prescription opioid diversion following recent legislative interventions in Florida. Pharmacoepidemiology and Drug Safety, 23, 314–320. 136. Johnson, H., Paulozzi, L., Porucznik, C., Mack, K., & Herter, B. (2014). Decline in drug overdose deaths after state policy changes—Florida, 2010– 2012. MMWR: Morbidity and Mortality Weekly Report, 63, 569–574. 137. Brennan, T. A., Rothman, D. J., Blank, L., Blumenthal, D., Chimonas, S. C., Cohen, J. J., … Smelser, N. (2006). Health industry practices that

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create conflicts of interest: A policy proposal for academic medical centers. The Journal of the American Medical Association, 295, 429–433. 138. Kassirer, J. P. (2005). On the take: How medicine’s complicity with big business can endanger your health. New York: Oxford University Press. 139. Meier, B. (2007). In guilty plea, Oxycontin maker to pay $600 million. New York Times. Available at

11 Early Intervention in Psychosis: From Science to Services Thomas E. Smith and Lisa B. Dixon

11.1 Framing the Issue Over 100 years ago, Emil Kraepelin asserted that the majority of individuals with schizophrenia (which he labeled dementia praecox) experience progressive functional deterioration and chronic disability. Subsequent population studies showed variability in short- and long-term outcomes [1–4] and raised hopes that the disease is malleable and responsive to interventions. Yet despite notable treatment advances, rates of recovery and disability have not changed appreciably for most of the past century [5, 6]. Indeed, for much of the past 50 years many US federal and state mental health policies served to limit access to rehabilitation and recovery-oriented services for individuals [7]. These barriers were even greater for individuals who did not have an established chronic illness, once the service system began to prioritize already disabled individuals [7]. Many researchers developed and studied psychosocial treatment approaches for all of the life stages of schizophrenia throughout the second half of the twentieth century [8]. However, the seminal work of Pat McGorry and colleagues in Australia in the early 1990s heralded a shift in focus to specific interventions targeting early detection and treatment of psychotic disorders. Between 1990 and 2010, early intervention services for psychotic disorders were developed and implemented in Australia and T. E. Smith (*) · L. B. Dixon  New York State Psychiatric Institute, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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Northern Europe [9, 10]. The impetus for this early work was the repeated and robust finding that duration of untreated psychosis (DUP) is among the strongest predictors of short and long-term outcomes across multiple dimensions including symptoms and functioning [11]. Findings from the initial wave of studies in Australia and Europe stimulated interest worldwide to develop and implement early intervention programs. The primary goal of these programs was to provide treatment earlier in the course of the disorder, potentially lowering DUP and thereby limiting long-term disability. This approach echoes the treatment initiatives of previous mental health reform movements described in Chapter 1 of the handbook. The 113th United States Congress Consolidated Appropriations Act of 2014 required that states allocate a percentage of federal subsidies (“block grants”) to support evidence-based services for individuals experiencing early psychosis. In response, in 2016 the National Institute of Mental Health (NIMH), in collaboration with researchers involved in its Recovery After an Initial Schizophrenia Episode (RAISE) program and other leading investigators, identified a suite of services called Coordinated Specialty Care (CSC). They issued guidelines for CSC based upon the established clinical research evidence on treating first episode psychosis (FEP). The CSC model requires programs treating individuals with FEP to offer psychotherapy, medication management, family education and support, case management, and work or education support. Though not a specific requirement, the CSC model also encourages the use of peer support. CSC-designated programs must have a recovery-oriented approach and promote shared decision-making support with highly personalized treatment plans. The CSC model is the foundation for state and national efforts to support dissemination of early intervention services for individuals with a psychotic disorder, particularly those experiencing a FEP. This chapter will focus on key policy questions related to early intervention services for FEP, with a specific focus on CSC programs in the United States.

11.2 Questions Key policy questions related to the successful implementation of CSC programs relate to: understanding their impact; addressing barriers to system-wide implementation; assessing quality and outcomes; and financial sustainability.

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11.2.1 What Has Been the Impact of Coordinated Specialty Care Programs? Individuals with FEP are highly vulnerable and often either inappropriately or undertreated. A recent cohort study of 1357 individuals showed a 12-month mortality after the index psychosis diagnosis that was 24 times greater than in the general US population aged 16–30 [12]. The study also found that in the year after FEP diagnosis, 61% filled no antipsychotic prescriptions, 41% received no individual psychotherapy, and 62% had at least one hospitalization and/or emergency department visit [12]. By the year 2000, experts had established the rationale for multi-element team-based care for individuals early in the course of a psychotic disorder [13] and a number of well-designed studies had indicated that phase-specific interventions could positively impact the early course of psychotic disorders [14–20]. These studies informed the development of the intensive service model (Coordinated Specialty Care or CSC) for individuals with FEP that was tested in the RAISE studies. Data from the RAISE and other studies address questions that must be answered to inform efforts to scale CSC services to meet population needs: What short-term (1–2 years) outcomes should CSC programs be expected to produce? How enduring is the impact of CSC? When should individuals transition off CSC services?

11.2.2 What Strategies Can Most Effectively Support Implementation of CSC Programs? Policy makers implementing CSC programs face the challenge of using a medical care payment system to support a treatment approach that is part medical, part public health, and part disability services. In addition, inadequate funding for the full range of services contributes to the lack of adequately trained providers of educational, peer, and employment supports. Finally, there is little consistency regarding licensing or certification standards for providers of these support services. What are the workforce development needs and how can key stakeholders be activated to support implementation of CSC programs? Important questions also arise regarding case-finding, for example, how to identify individuals with a FEP and initiate treatment as soon as possible. DUP is a robust predictor of poor symptom control, relapse, and impaired functioning [11] and policy makers implementing CSC programs should prioritize efforts to facilitate rapid and timely access to care. Delays

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in seeking care for a FEP are common for multiple reasons including: (1) attenuated psychotic symptoms are common in non-affected young adults and do not progress to the point of needing treatment; (2) psychotic symptoms often have an insidious onset; (3) affected individuals and family member may fail to recognize psychotic symptoms presenting for the first time; and (4) the stigma associated with mental illness often delays recognition and care-seeking. How should policy makers define eligibility criteria to ensure optimal access to CSC? How should programs be designed to effectively and respectfully outreach individuals in these difficult circumstances? What strategies are most likely to rapidly engage individuals with FEP in CSC programs?

11.2.3 How Should the Quality of Care Be Assessed in CSC Programs? The American healthcare system is rapidly adopting measurement-based approaches at all levels of care and oversight. Providers now routinely use data in point-of-care decision-making, regulatory agencies use big data to understand population-level trends, and payers are adopting performance-based payment schemes that rely on quality measures. To ensure adequate scaling up of evidence-based CSC, policy makers should implement quality measurement requirements. What quality and performance measures should be required for CSC programs? How important is it to measure fidelity?

11.2.4 Can CSC Programs Be Financially Sustained? Treating the over 20 million people living with schizophrenia worldwide is estimated to cost $94 million–$102 billion [21]. Perhaps the most significant obstacle to widespread implementation of CSC programs for individuals with FEP is lack of established payment mechanisms. Elements of CSC such as education and employment supports, outreach, and peer services are not traditional medical services and are not covered by Medicaid or commercial insurance programs. Can public and private insurers be expected to cover CSC services? How do policy makers determine the need for initial and/or ongoing subsidization of CSC programs? What other financing strategies can be used to address implementation barriers to CSC?

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11.2.5 What Other Important Questions and Controversies Should Be Considered? The development of CSC has been lauded as a model for rapid translation of science to practice. It typically requires 15–20 years to establish new evidence-based healthcare interventions as standard practice, yet within 2 years of publication of findings from the RAISE-Early Treatment Program (RAISE-ETP) study [22] 48 states plan to implement CSC programs (R. Heinssen, personal communication, 2017). Public support for CSC in the United States is partly related to concerns about violence and mental illness. There were several mass shooting events in the United States involving young adults including the December 2012 Sandy Hook elementary school shooting in Newtown, Connecticut. Such dramatic and tragic events help mobilize public support and funding for new initiatives such as CSC but also create the potential for false expectations, for example that CSC programs will reduce episodes of violence among young adults. CSC programs offer comprehensive risk assessment and safety planning but it is unlikely that these programs will identify and address the complex psychological, social, and environmental factors that coalesce in those rare instances of impulsive and extreme violence such as mass shootings, many of which involve young adults with no identified psychiatric disorder. Policy makers must be attentive to public sentiment and expectations as they work to implement and sustain CSC programs. (See Chapter 18 for a discussion of policy issues surrounding gun violence.) Other important questions include: Does CSC represent a secondary or tertiary prevention approach? Will decreasing the DUP truly lead to better long-term outcomes? Should greater efforts be made to offer services to “clinical high risk” populations before the advent of psychosis? What if long-term outcomes following CSC prove to be no different than routine treatment, or what if better long-term outcomes are only obtained when the intensive services that are part of the CSC model remain in place indefinitely?

11.3 Evidence Here, we review available evidence pertinent to the questions identified in the previous section. We also provide evidence to support an array of policy changes to improve CSC and its implementation.

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11.3.1 Short-Term Outcomes of CSC Programs In 2010, the NIMH committed to funding the RAISE study, which included 2 distinct projects. The RAISE-ETP was a large randomized clinical trial testing the effectiveness of a comprehensive package of medical, support, rehabilitation, and employment services as compared to treatment as usual. The RAISE Implementation and Evaluation Study (RAISE-IES) examined the facilitators and barriers to implementation of a similar package of individual, rehabilitation, and functional support services in one site in each of two states (Maryland and New York). The RAISE-ETP included a CSC intervention labeled “NAVIGATE” [23] for individuals with FEP. The program incorporated manual-based approaches to psychopharmacology [24]; individual resilience therapy; family therapy/psycho-education; and supportive employment/education (manuals available at A randomized controlled trial comparing the intervention to usual care examined quality of life and other outcomes [22]. At two years of follow-up, the NAVIGATE-treated patients had a significantly better quality of life, lower ratings of positive, negative, and depression symptoms, greater retention in care, and higher ratings of engagement in work or school. DUP, measured as the time between onset of psychosis and first antipsychotic medication treatment, had a highly significant moderating effect with those individuals having a DUP shorter than 74 weeks deriving significantly more benefit from CSC than those with longer DUP [22, 25]. In the RAISE-IES 65 individuals were recruited at two sites and followed for up to two years. Participants had reduced symptoms and fewer hospitalizations [26, 27]. Hospitalization rates decreased from 70 to 10% by 3 months [27] and 34% of participants were hospitalized in the first year, a rate similar to that seen in other CSC studies [16]. The RAISE studies also examined work and school participation along with applications for disability. In RAISE-IES, improvement in GAF scores continued to 12 months [27] and education/employment rates increased from 40 to 80% by 6 months [26, 27]. Treatment fidelity, engagement and family involvement mediated improvement in social and occupational functioning [28]. A majority (91%) of participants met with a supported employment and education specialist at least three times in the first year [29]. In the RAISE-ETP study, 17% of participants in the usual care cohort and 13% of those in the CSC cohort were employed at baseline [22]. At the

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2-year follow-up, 30% of those in the usual care cohort and 30% of those receiving CSC participated in work [30]. The RAISE-ETP study also reported findings regarding the receipt of Social Security Administration (SSA) disability benefits (Supplemental Security Income or Social Security Disability Insurance) [31]. There were no differences between CSC treatment and usual care: 9.0% of all participants received SSA disability benefits at baseline and 34.1% of the remaining participants obtained benefits during the 2-year study period. In contrast, disability rates were much lower in OnTrackNY, New York State’s 19-site CSC program (see below). An estimated 2.5% of the first 679 OnTrackNY participants were receiving SSA disability benefits at baseline and another 18.3% obtained disability benefits in the subsequent two years [29]. These contrasting disability rates may in part reflect different characteristics of the samples and site requirements for the 2 RAISE studies. Other recently completed studies have demonstrated positive short-term (1–2 year) outcomes for individuals with FEP receiving multi-element team-based care [9, 32–34]. A cohort study of 1522 individuals with FEP showed that those who accessed early psychosis intervention services showed lower rates of all-cause mortality and emergency room presentations over a 2-year follow-up [35]. In 2018, Correll and colleagues [36] reported a metaanalysis of 10 randomized clinical trials comparing early intervention services to treatment as usual for individuals with early psychosis (including the RAISE-ETP study). The analysis found evidence for better outcomes in allcause treatment discontinuation, hospitalizations, involvement in school or work, and symptom severity [36].

11.3.2 Longer-Term Outcomes of CSC Programs Initial long-term follow-up studies of individuals who received multielement team-based care indicate that clinical gains may not be sustained. Sigrunarson and colleagues [37] conducted a 12-year follow-up of 50 individuals with recent-onset schizophrenia randomized to receive either teambased care or treatment as usual for two years and found no differences in the number of days in hospital, time to readmission, psychiatric admissions, or number of outpatient contacts. Five- and 10-year follow-up data from the Danish OPUS study showed that improvements in clinical status (positive and negative symptoms) in individuals who received multi-element team-based care for the initial two years had largely vanished by 5 years [38].

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Individuals who received team-based care had fewer overall days in the hospital at the 5-year follow-up and fewer days in supportive housing at both 5- and 10-year follow-up points [38, 39]. Recent studies tested whether extending multi-element team-based care beyond two years leads to more sustained benefits. Chang and colleagues [40] showed that extending team-based care from 2 to 3 years was associated with greater likelihood of achieving functional (social and occupational) remission, although only 19.9% of individuals achieved a functional remission. Long-term follow-up of participants enrolled in the Treatment and Intervention in Psychosis Study revealed a significantly higher percentage of early-detection individuals had recovered at the 10-year follow-up relative to the usual detection cohort [41]. Two recently completed randomized studies examined the impact of extending team-based care from 2 to 5 years. In the OPUS II study, 400 individuals enrolled in care upon their initial diagnosis of a schizophrenia spectrum disorder were randomly assigned to five years of multielement team-based care versus two years of team-based care plus three years of standard community treatment [42]. The 2 groups did not differ on the primary outcome of negative symptoms. Individuals receiving five years of team-based care were more likely to remain engaged in treatment and had higher ratings of client satisfaction, but there were no differences on measures of psychotic symptoms, days hospitalized, or occupational functioning [42]. Malla and colleagues [43] reported findings from a similar randomized study comparing three-year extension of multi-element team-based care in Montreal. Individuals receiving team-based care for 5 years had significantly longer periods of remission of positive and negative symptoms and higher rates of retention in treatment. The study did not assess functional status [43]. Further research is needed to understand the impact of CSC programs on intermediate- and long-term clinical and functional outcomes. For example, a follow-up analysis of data from the OPUS II study suggested that individuals with a shorter DUP were more likely to benefit from prolonged multi-element team-based care (up to 5 years) [44], further underscoring the importance of DUP (see below). Another long-term follow-up study of 617 individuals with FEP who received early intervention services compared to a matched cohort of individuals with FEP who did not receive the services showed that those who received two years of early intervention services were less likely to die by suicide (4.4%) than those who received standard care (7.5%) over the 12 years they were followed [45]. This intriguing finding suggests that CSC programs may have sustained beneficial impact.

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The few studies to date suggest that improvements in illness management and relapse rates may not endure for more than 1 year following receipt of services, and data are also mixed regarding the impact of CSC services on longer-term employment and educational functioning. It is highly likely that sub-groups of individuals with psychotic disorders will need extended intensive supports to maintain gains achieved from CSC services. Examples may include individuals with characteristics predicting long-term poor outcomes in FEP studies such as premorbid deterioration in social functioning; failure to show remission of symptoms within 3 months of pharmacologic treatment; DUP greater than 26 weeks, or those meeting diagnostic criteria for a core schizophrenia spectrum disorder [46]. Policy makers with limited resources must decide whether investing in CSC programs is preferable to alternative feasible approaches given the short-term gains from early intervention services. Further research is needed to determine what treatment resources and supports will promote sustained long-term benefits for individuals receiving CSC. At present and given the finding of predominantly short-term benefits from the CSC models tested to date, policy makers must consider important implementation questions such as requiring targets for enrollment and numbers of individuals served that will compel CSC teams to step down individuals to lower levels of care when stabilized. It is essential that states and other systems of care implementing CSC services closely monitor service use patterns (length of stay and amounts of specific services received) as well as post-discharge outcomes to build a database of information that can inform future research and allow for thoughtful refinement of policy. The heterogeneity of illness and response suggests that a “one size fits all” solution to CSC implementation will not produce optimal results. In the meantime, difficult decisions must be made regarding when individuals should transition out of CSC programs and continue their care in mainstream clinical services. For many individuals, this may involve a sudden and steep drop-off in the amount of services and supports available and an increased risk for relapse and poor outcomes. Transition strategies that minimize these risks must be developed and tested. Although many questions remain, evidence is accumulating that the timing of access to CSC is critical. Shorter DUP appears to play an important role in predicting a positive response to CSC, even in the long-term. Also, ending CSC after a pre-defined time period and without attention to appropriate follow-up is likely to compromise the impact of the intervention. Further research will clarify what is the right treatment to provide to individuals with FEP at the right time and for how long.

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11.3.3 Strategies That Most Effectively Support Implementation of CSC Programs Strategies to improve CSC implementation include workforce development, collaboration with stakeholders, and modifications of program eligibility. Current evidence in support of each of these strategies is considered below. Workforce Development Needs A significant obstacle to successful implementation of CSC programs involves workforce availability and training. There are relatively few adequately trained care managers, educational counselors, and job coaches, in part because these interventions have not been covered by medical insurance programs. A primary challenge for CSC service providers is to recruit new staff and help existing staff acquire new skills. A further complication for providers is the lack of consistent licensing or certification standards for CSC practitioners. Perhaps the best example involves peer support service providers. The recovery movement has stimulated efforts in several states to develop training and certification programs for individuals with lived experience to join the care system as providers of peer support services. Much important work is underway to clarify the qualifications, certification procedures, and specific job responsibilities of peers integrated into the healthcare system [47, 48]. Standards and regulations vary significantly from state to state, however, and policy makers must adapt their programs and policies accordingly. States like New York have developed specific training and certification standards for peers who will provide Medicaid-reimbursable services. While the target population for CSC services includes both teenagers and young adults, behavioral health training programs typically focus only on either children/adolescents or adults, rarely integrating training across the “transitional age” population. Child-trained healthcare professionals often have limited experience with psychosis, which is more common in adults, but have a much-needed developmental perspective and are comfortable working with families. Additionally, inadequate training and experience in managing substance use challenges both child- and adult-trained mental health practitioners. The workforce must unlearn much of what they were taught in school about poor outcomes to be expected for individuals with schizophrenia as well as those with co-occurring substance use. States and networks need to implement introductory and ongoing training to maximize efficiency

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and effectiveness, building on local strengths in recovery-oriented practice. A variety of new learning strategies including online solutions and learning collaboratives are now available to augment traditional didactic and supervisory training activities. For example, the NIMH funded a Small Business Innovation Research grant to develop a standardized online CSC training protocol and a virtual community of practice to support skill maintenance and collective learning [49]. Activation of Key Stakeholders Advocacy groups such as the National Alliance on Mental Illness have made it a priority to promote the rollout of CSC programs, and delivery of CSC enjoys the support of scientists, clinicians, policy makers, and advocates. A CSC program in England combined a direct care pathway with a community psychosis awareness campaign including a youth-friendly website as the central hub [50]. This combination led to dramatic improvements in access, reducing the DUP in half as compared to routine care. Outreach and community awareness initiatives targeting individuals with FEP present unique logistic, privacy, and ethical challenges reviewed in the section below on strategies to rapidly engage individuals in CSC programs. The RAISE-IES project included qualitative studies focusing on engagement of individuals with FEP and family members [51, 52]. Individuals with FEP were more likely to engage in care that was individually tailored, involved family members, and focused on the individual’s identified goals especially those related to employment and education [51]. Family engagement was facilitated by direct outreach and flexibility within the program model [52]. These studies should encourage policy makers implementing CSC programs to allocate resources to engage individuals, families and local stakeholder groups to build support in the community and enhance access. The NIMH published an online manual that provides extensive guidance on tools and resources to support training for CSC providers [53]. CSC programs are novel both in content and in approach and may therefore present challenges to the treatment status quo. The person-centered approach inherent in the CSC model prioritizes provider attitudes and approaches that have not been central to the care of individuals with psychotic disorders in mainstream treatment systems. These include strengthbased care planning and shared decision-making that empowers individuals to choose from among different treatment options the one that best suits their personal goals and preferences. It includes a team-based philosophy in

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which the psychiatrist is typically not the leader but instead a member of a consultative team. This underscores the broader context for CSC, extending beyond a medical-centric approach. It requires providers to at times tolerate greater risk than they might otherwise in order to allow individuals the dignity to fail as they pursue their goals. Policy makers can ensure that these critical elements of the CSC model are implemented by requiring robust quality and performance measures for designated CSC providers. Reporting programs should include measures beyond commonly used and endorsed outcomes and include person-­centered measures derived from surveys that document individuals’ perspectives regarding their involvement in treatment decisions, whether their personal goals are considered in care planning, and their perceived quality of life. Examples include surveys such as the Consumer Assessment of Healthcare Providers and Services [54], the Mental Health Statistics Improvement Program (MHSIP) Survey [55], and the Experience of Care and Health Outcomes Survey [56]. Defining Eligibility Criteria to Ensure Optimal Access to CSC A number of questions arise regarding eligibility for CSC programs. The initial episode of a schizophrenia spectrum psychotic disorder typically occurs between the ages of 15–25, as individuals navigate puberty and young adulthood. Important eligibility questions surround diagnosis. The RAISE projects and CSC guidelines targeted individuals with non-affective psychoses, consistent with the aim of early intervention for psychotic disorders that have higher rates of chronicity, functional limitations, and disability. A critical question is whether programs should also serve young adults with affective psychoses. At the clinic level and especially in underserved or other areas where access to highly trained behavioral health clinicians is limited, it can be difficult to distinguish between non-affective and other psychotic episodes. On the other hand, research supporting the program has focused primarily on schizophrenia-related illnesses. Finally, there are important unresolved questions regarding the impact of interventions targeting individuals shown to be at high risk for developing psychosis (see below). A common and especially challenging example is co-occurring psychosis and substance use. CSC programs will be referred many individuals for whom the psychotic symptoms appear to be directly caused by a primary substance use disorder. Individuals with primary substance use disorders

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have fundamentally different treatment needs which are usually not well met by CSC program elements. For this reason, CSC programs are advised to not accept referrals of individuals with psychotic episodes that are caused by the primary substance use disorder, which may lead to confusion and potentially strain relationships between CSC providers and referral sources. At the same time, CSC programs should understand and anticipate that a significant number of individuals with non-affective first episode psychoses have co-occurring substance use disorders. These individuals should not be denied access to CSC programs, which are expected to address the cooccurring substance use. It is essential that CSC programs adopt clear eligibility requirements and have experienced clinical staff capable of triaging referrals and maintaining good relations with referring sources. Programs and states can make their own choices regarding eligibility, aware of the limits of the underlying research and clinical challenges in differentiating different types of psychotic disorders. Policy makers must ensure that both adult and youth systems of care can accommodate and support CSC services, given that services for adults and youth often have separate organization, oversight, and payment structures. Finally, policy makers must support ongoing efforts to educate providers, families, and stakeholders regarding the boundaries of effectiveness of CSC for specific conditions. Strategies to Rapidly Engage Individuals in CSC Programs Policy makers face many questions regarding case-finding, e.g., how to identify individuals with a FEP and initiate treatment as soon as possible. A recent study reported that the majority of individuals with FEP used healthcare services in the year prior to the initial psychosis diagnosis, and that 60% received a mental health diagnosis during the year prior [57]. The authors noted that use of primary care versus mental health care did not distinguish those who went on to develop a FEP [57], suggesting that early detection efforts should not be limited to traditional mental health settings [57]. Delays in seeking care for a FEP are common for multiple reasons including: (1) attenuated psychotic symptoms that do not need treatment are common in young adults; (2) psychotic symptoms often have an insidious onset; (3) affected individuals and family member may fail to recognize psychotic symptoms presenting for the first time; and (4) the stigma associated with mental illness often delays recognition and care-seeking.

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Research has consistently shown that the DUP is among the most robust predictors of poor intermediate- and long-term outcomes in schizophrenia [11, 46]. In the RAISE Early Treatment Program, the median DUP was 74 weeks [25], indicating significant opportunities for improved identification and referral strategies in the following areas: (1) public health surveillance; (2) predictive modeling using healthcare data; (3) targeted outreach; and (4) community education. More evidence is required to assess the outcomes of CSC combined with outreach efforts that reduce DUP, to distinguish between the effects of earlier case identification versus the effects of CSC itself. An example of public health surveillance and outreach program targeting individuals with FEP is the New York City Supportive Transition and Recovery Team [58], which serves individuals between 18–30 years old hospitalized for a first episode of psychosis. New York City hospitals are required to report all admissions of individuals with FEP to the City’s mental health oversight agency. Upon notification, NYC START staff contact the hospital to offer services by trained social workers and peer specialists during hospitalization and for the first three months after hospital discharge. Services are voluntary and use a critical time intervention case management model to improve linkage to care, connect patients to recovery-oriented services and support the transition back to the community. Health insurance companies and state health/mental health oversight agencies have access to insurance claims and other administrative data that can be modeled to identify individuals who may be experiencing a FEP. For example, Simon and colleagues [59] used electronic health record (EHR) data from five large healthcare systems to identify over 37,000 individuals who had an initial psychosis diagnosis over a 7-year period. The study team confirmed diagnoses on a random sub-sample of identified cases and were able to estimate true incidence rates of FEP [59]. With further validation, oversight agencies and payers can use algorithms like this to identify and outreach to individuals likely to be experiencing FEP. Issues that remain to be addressed before these predictive modeling algorithms can be widely used include: (1) lack of clarity about how to define a potential psychotic episode from administrative data; (2) lag periods associated with submission and processing of administrative data that delay potential outreach activities; and (3) variability in oversight agency and payers’ abilities to create, implement, and monitor such programs. An example of targeted outreach efforts to identify individuals with a FEP involve school-based screening and treatment programs. A major aim

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of the CSC model is to help individuals with a FEP retain their current functioning, goals, and activities. Locating CSC teams in schools will both support earlier identification (due to opportunities to consult and collaborate with existing school counseling programs) and engagement in services. Program leaders working in schools will also need to carefully think through the issues reviewed above while considering confidentiality of healthcare information, the impact of stigma, and the potential for misidentification and labeling of individuals from screening that lacks specificity (see below). Efforts are also needed to identify individuals with FEP in other settings such as prisons/jails [60]. Community education programs have also been used to support CSC implementation. Many programs have websites with links to resources for individuals and families as well as referring entities. The RAISE-IES project developed resources and tools to help administrators and individuals start their own CSC programs, including treatment manuals and program guides [53]. Policy makers implementing CSC programs should support multi-­ pronged efforts to identify and engage in care individuals with FEP. City and state healthcare oversight agencies could require providers (including hospital emergency departments and inpatient units) to notify a coordinating entity when individuals present for care with a new onset psychotic illness. This would allow for targeted outreach to providers, individuals and families regarding available services and supports, although there will likely be advocates protesting the creation of registries of individuals with behavioral health conditions. These outreach and engagement activities raise important concerns about privacy and confidentiality. For example, encouraging workers in schools, recreational centers and places of worship to engage young adults in discussions about distressing thoughts and emotions as well as personal stressors may alienate some individuals and families and lessen the likelihood of their seeking care. Maintaining data in registries carries the risk of privacy breaches that could negatively impact an individual’s school, work or social functioning. As noted above, another major concern involves the potential for labeling young adults as mentally ill when they may not have a condition requiring treatment or follow-up. Nonetheless, similar public health secondary prevention efforts have proven highly beneficial in populations including individuals with human immunodeficiency virus (HIV), domestic violence, and substance use disorders. Policy makers supporting the implementation of CSC programs should apply lessons learned from such outreach efforts.

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11.3.4 Assessing the Quality of Care and Performance in CSC Programs The Triple Aim principles guiding American healthcare reform emphasize quality and performance measurement approaches to incentivize provider practices. Efforts to implement CSC programs in large systems of care should incorporate measurement strategies known to improve uptake of evidence-based practices. Performance Measurement Using the Donabedian [61] model for performance improvement, programs should consider the measurement of structural, process, and outcome quality domains. Structural quality measures include measures of CSC providers’ adoption and use of EHRs and insurance/managed care organizations’ ability to routinely report population-level data on identification of new cases and care coordination activities. In certain circumstances, process measures may be more relevant and useful than outcome measures. One example involves suicide: over 40,000 individuals commit suicide in the United States each year, but the frequency of suicides in smaller populations such as individuals with FEP will likely be too low to allow for opportunities to detect meaningful trends. It may therefore be more practical to assess processes of care to prevent suicide. Another example involves the increasing focus on individuals with behavioral health conditions and public safety. There is an ongoing public debate about whether and to what degree the presence of a psychotic disorder increases the risk of an individual committing violent acts, but it is neither feasible nor reasonable to create measures of rates of violence in FEP populations. Research has shown that individuals with behavioral health conditions are less likely to be involved in violent episodes when they are engaged in care [62, 63]. For populations of individuals with FEP, process measures of engagement and retention in care should therefore be employed until more relevant outcome measures are available. Examples include measures of timeliness and frequency of visits with CSC team members, especially following discharge from an inpatient program or after identification of a new substance use disorder. Perhaps most important, policy makers must require that CSC providers, payers, and oversight entities report outcome measures that are most relevant for individuals with FEP. Psychotic disorders contribute directly to functional

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deficits in employment and education status, social connectedness, quality of life, and independent living skills. Yet there are no currently endorsed outcome measures for these domains, which are key targets for CSC services [64]. Claims data will never yield functional outcome measures and many state mental health agencies currently use homegrown measures of functional outcomes to support oversight of programs for individuals with serious mental illnesses. Similar efforts must be used to support the implementation of CSC programs. The National Institutes of Health-sponsored PhenX (consensus measures for phenotypes and exposures) program has developed a toolkit of recommended measures for CSC research [65]. Performance measurement experts strongly endorse standardizing data elements in provider EHRs to document social determinants and functional outcomes [66]. Providers and insurance/managed care organizations participating in value-based payment arrangements should support efforts by CSC providers to incorporate standard elements in their EHRs defining key social determinants and functional capabilities to create a source of reliable information and also to generate the data necessary to validate measures of social and functional outcomes. Importance of Fidelity Measurement Key process measures for programs involve fidelity, that is, whether CSC services are being delivered as intended. Policy makers must strive to find the appropriate balance of fidelity and flexibility. Regulations and fidelity standards that are overly strict will threaten the ability to scale services to meet the needs of diverse groups of both individuals with FEP and providers of CSC. At the same time, flexible standards that lower the bar for fidelity will facilitate implementation but can dilute the effectiveness and impact when key therapeutic elements of CSC are not adequately incentivized. Radhakrishnan and colleagues [67] attempted to document this balance by assessing costeffectiveness of an early intervention service in England based upon degree of fidelity to the English Department of Health’s Policy Implementation Guide on early intervention teams. They found that an intermediate level of fidelity was most cost-effective and that dropping below a certain level of fidelity resulted in marked reductions in effectiveness. Policy makers implementing CSC must include a plan for assessing fidelity. Although potentially labor intensive and costly, fidelity assessment will help establish optimal baseline standards for implementation and will also allow oversight agencies to identify sub-standard performance and

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opportunities for follow-up corrective action. The RAISE-IES project developed resources and tools to help administrators and individuals start their own CSC programs, including treatment manuals and program guides [68].

11.3.5 Ensuring Financial Sustainability of CSC Programs Policy makers need to consider financing strategies involving insurance coverage and other financing approaches, such as state categorical appropriations and federal block grants. Insurance Coverage for CSC Programs CSC programs should be expected to derive revenue from combinations of Medicaid and commercial insurance. Many young adults with FEP are covered by family commercial insurance plans and it will be critical for state policy makers to advocate with their health insurance oversight programs to support coverage for CSC in these commercial plans. However, commercial plans in the United States typically follow the lead of public insurers (Medicaid and Medicare) when considering novel coverage approaches and/ or new services. There have been a number of federal Medicaid reform initiatives that can potentially address the needs of individuals with FEP and serve as models for novel commercial plan reimbursement schemes. For example, the Affordable Care Act’s State Medicaid expansions allow individuals to qualify for benefits on the basis of low income, alone. Previously, Medicaid eligibility was limited to individuals who were already disabled and receiving Supplemental Security Income (or those who qualified through the Temporary Aid for Needy Families program). Not all States have expanded Medicaid and even for those who do qualify for Medicaid on the basis of income, in some States, the lack of an established multiyear duration of serious mental illness or other disability can preclude access to enriched Medicaid benefits that are components of CSC but typically are limited to people with multi-episode schizophrenia [7]. State Medicaid directors should consider broadening Medicaid eligibility criteria to include people with early psychosis to avoid requiring that individuals with psychotic disorders demonstrate functional deficits before they are able to receive an intervention designed to avoid such decline. Federal Medicaid regulations also allow for states to request waivers to add new services to their Medicaid benefit program [69]. As the evidence base for CSC grows, State insurance commissioners can request a waiver to

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allow for Medicaid reimbursement for traditional non-medical services like peer, employment and education supports. These are examples of Home and Based Services (HCBS) that were first developed for individuals with medical disabilities living in nursing homes or institutions and are meant to help facilitate the transition to community-based living. Traditional HCBS include education and employment supports and provisions introduced in the Affordable Care Act in 2010 allow for states to offer these HCBS to individuals with mental illness. As of 2017, several states have pursued this option for individuals with serious mental illness [70]. This approach should be considered for CSC programs. Many individuals with FEP are enrolled in managed care programs, either via Medicaid or a commercial plan (typically via coverage under a parent’s policy for those under 26 years old). Policy makers should engage the leadership of both commercial and not-for-profit insurers to support CSC benefit coverage for individuals with FEP. This may require coordination between insurance regulators and politicians given the commercial insurance plans’ traditional wariness to provide comprehensive coverage for serious mental illness. However, recent changes including Medicaid expansion under the Affordable Care Act have encouraged insurance companies to expand their scope to populations with serious mental illness and they can now play a major role in identifying individuals with FEP and engaging them in services that will limit disability. For example, Medicaid managed care plans can offer coverage for CSC services not in their benefit package via “in lieu of ” or other mechanisms that allow for flexible coverage on an individual basis [71]. State and federal insurance regulators should consider incentives for insurers to use such mechanisms. Policy Issues in Subsidies for CSC Programs Current public and commercial insurance programs cannot be expected to reimburse the entire array of services provided by CSC programs and policy makers must consider supplemental funding sources. A major current challenge is determining the types and amounts of CSC services that are reimbursable under current mechanisms versus the amount that must be subsidized or otherwise reimbursed. Some of the opposition to funding is based on concerns about cost under current financing incentives, which might be altered with new payment approaches. Frank and colleagues [72] propose a three-part model for paying for early psychosis services that includes: (1) per-service payments for covered medical services; (2) a

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prospective case-rate for non-covered services; and (3) an outcome-based component based upon achieving quality and performance measures. The CSC model includes a range of services and prioritizes individualized care planning, which will lead to wide variability across individuals in the types and amounts of services delivered. Individuals with FEP will also vary in their use of specific services over time depending for example on the stability of the illness and motivation to pursue education or employment supports. This variability makes it difficult for CSC programs to anticipate the expected costs and revenues for both billable and non-billable services. Humensky and colleagues [73] developed an interactive modeling tool that allows planners to input estimates for relevant variables and see the impact on projections for number of CSC teams needed to serve an identified population area. This tool was used to scale implementation of CSC teams throughout New York State from 2013 to 2017. Such tools can help established population-based data sets to model typical patterns and costs. RAISE-IES also showed it was possible to sustain a long-term program by collaborating with state mental health authorities to fund CSC services [74]. The New York Office of Mental Health (OMH) implemented the OnTrackNY initiative, a statewide CSC treatment program which builds on the successful RAISE initiatives in New York State [75] by combining state and federal subsidies with billing guidelines for medically covered services. This project demonstrated the feasibility of starting and maintaining a CSC program within the US healthcare system. Much more information is needed to understand the scope of funding gaps for CSC. New York State conducted a time study in 2017 to determine the types and amounts of specific reimbursable and non-reimbursable services being delivered by its CSC-designated programs. This study identified both coverage and pricing problems: only 57% of team members’ efforts were spent on activities that were reimbursable by the State’s Medicaid Program. In addition, the existing fee-for-service reimbursement rates were inadequate: the 57% of staff effort providing reimbursable services was estimated to generate revenue covering only 31% of the teams’ average costs. Other Financing Strategies to Address Implementation Barriers to CSC In the meantime, there are several US state and federal government policy initiatives underway to address CSC funding gaps. The 113th Congress Consolidated Appropriations Act, 2014 added 5% to the Substance Abuse

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and Mental Health Services Administration (SAMHSA) Community Mental Health Block Grant program with the expectation that the monies be used to develop and support evidence-based programs for individuals experiencing early psychosis, including programs that adhere to the CSC model. In 2016, the 21st Century Cures Act doubled the 5% SAMHSA block grant set-aside, providing an additional $50 million for states to develop CSC programs. By 2016, 36 states had begun implementing one or more CSC programs and by 2018, that number grew to 48 states (R. Heinssen, personal communication, 2017). The Centers for Medicare & Medicaid Services has published detailed guidance for benefit design and financing approaches for CSC services [76]. Policy makers are testing additional approaches to fill the funding gap for their CSC programs including subsidies from states and value-based payment initiatives [77]. Michigan responded to the coverage and pricing constraints described above by increasing Medicaid fees for services that are traditionally covered (medication management, individual and family therapy) to offset services (peer, employment and education supports) and indirect time that are not reimbursed by Medicaid (C. Adams, personal communication, 2018). Some states have offered flat subsidies to CSC programs covering both start-up and ongoing costs. This approach can create problems if the CSC programs come to rely on the subsidies and fail to implement procedures to ensure they are identifying reimbursable services and submitting claims for payment to individuals’ Medicaid or commercial insurance. Many behavioral health agencies implementing CSC programs are small community-based organizations without sophisticated finance and billing resources; these agencies will need further support to implement procedures to ensure timely and accurate billing.

11.3.6 Unresolved Questions and Controversies One of the main unresolved questions concerning CSC has to do with its preventive potential. The CSC model incorporates multiple evidence-based practices. When provided in a team-based model, CSC offers effective tertiary prevention by making care available to a previously neglected population of individuals with FEP. Further research is needed to determine how CSC can support secondary prevention efforts that result in earlier detection of disease. Two prior studies reviewed above indicated that multi-element team-based care combined with targeted

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community outreach efforts can lead to reduced DUP [41, 50]. Future refinements of the CSC model should identify optimal strategies for earlier identification of psychosis. The other important open question is whether reducing DUP directly leads to better intermediate- and long-term outcomes. Cross-sectional observations associate longer DUP with poorer outcomes and provide a rationale for developing outreach and treatment interventions that lower DUP. Future well-designed studies such as those by Srihari and colleagues [78] will test the impact of lowering DUP while controlling for selection bias and other factors such as ongoing access to care and supports that are highly likely to influence intermediate- and long-term outcomes of individuals with psychotic disorders. Offering Services to “Clinical High Risk” (CHR) Populations Before the Advent of Psychosis Contemporary with and in part stimulated by DUP studies of the prior 20 years, significant efforts have been made to identify and intervene with young adults showing prodromal or clinical high risk characteristics. These are individuals with combinations of attenuated symptoms, cognitive impairments, and family histories of serious mental illness that make them vulnerable to psychotic episodes. At any point in time, over one million adolescents and young adults in the United States experience problems in perception, thinking, and functioning suggestive of a pre-psychosis risk state [79]. A growing body of evidence supports early intervention as a means for preventing FEP among help-seeking individuals who meet defined criteria for CHR syndromes [34]. Efficacy findings are strongest for cognitive-behavioral therapy (CBT), which improves symptoms and reduces the relative risk of developing psychosis by more than 50% after 12 months [80–82]. It has also been shown that individuals who received CHR services and who developed a psychotic disorder showed a reduction of DUP of 11 days on average compared to those who did not receive the services [83]. A recent multi-site study involving 337 young adults found that those meeting CHR criteria who received intensive multi-element team-based care for 2 years showed greater improvements in positive symptoms and work and school participation as compared to a clinical low-risk population receiving treatment as usual [84, 85]. This group has also developed a predictive model including 6 cognitive, demographic, and functioning variables that allows for the calculation of a psychosis risk for individuals

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[86]. Despite these important advances, significant questions remain regarding the optimal use of CHR programs in a public mental health service system. Several studies have found no impact of CHR interventions [34] and other research indicates that only 20% of CHR individuals develop psychosis within 2 years [87]. It is also not clear whether the preventive effects of CHR interventions persist beyond 12 months [34]. These findings should provide caution to policy makers considering CHR programs, especially given the potential for major unintended consequences such as false positive detection that unnecessarily labels young adults as high-risk, or the potential for inappropriate exposure to psychiatric medications with significant short- and long-term side effects. These questions must be addressed in future research; until then, available evidence best supports access to intensive interventions as soon as possible after the onset of a psychotic disorder. Persistence, Intensity, and Duration of CSC Services Studies to date suggest that the impact of CSC may erode after the intensive services are withdrawn. It is possible that long-term (2-years and more) outcomes are no different for individuals receiving CSC as opposed to routine care. It may also be possible that gains associated with CSC only persist when the intensive services continue indefinitely, or that CSC improves symptom control and quality of life but does not alter the disability curve. Further research will address these questions and better illuminate the treatment and support needs that optimize long-term outcomes for individuals with FEP. In the meantime, policy makers, payers and providers must work together to determine which individuals should receive time-limited (1–2 years) CSC, open-ended long-term CSC, or routine care.

11.4 Conclusions CSC for individuals with established psychosis is ready for widespread implementation on the basis of demonstrated positive short- and medium-term outcomes. The landmark RAISE studies have been followed up by a highly coordinated effort to mobilize research, public policy, and clinical resources and rapidly implement CSC programs nationally. These efforts have been enormously successful—in 2008, only 2 states had such programs but as of 2018, 48 states have implemented at least 1 CSC program.

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Researchers must continue to examine critical questions regarding identification, access, and impact of CSC. DUP remains unacceptably high and novel approaches to case identification are needed, for example, efforts involving primary care providers and schools. Much also remains to be learned about the impact of CSC interventions on specific psychological processes (motivation, perceived autonomy), behaviors (treatment adherence, participation in training programs), and social and functional outcomes (getting/keeping jobs, completing school, community inclusion, quality of life). Further research will also clarify the mediating effects of symptoms and neurocognitive deficits on these processes and outcomes. Identifying characteristics of individuals who show good symptom control and preservation or restoration of functioning during the initial 1–2 years the individual is engaged with a CSC team will clarify eligibility criteria for future CSC programs. These efforts will also allow for the CSC model to be refined and strengthened. Goldman [88] notes that it is important to distinguish between the shortterm benefits of making CSC available to individuals who need it early in the course of an illness versus the longer-term potential of these services to prevent disability. The CSC model was developed with the ultimate aim of forestalling disability commonly associated with persistent psychosis and the model needs to be tested for its impact on disability rates. In RAISE-ETP, 36 (9%) of the 399 study participants were receiving SSA disability benefits at baseline and another 124 (34.1%) obtained benefits during the 2-year study period [31]. The CSC intervention led to a greater increase in participation in work or school but no differences were observed between CSC and comparison groups in earnings or public support payments. Obtaining benefits was predicted by more severe psychotic symptoms and was followed by increased total income [30]. In contrast, data from participants in OnTrackNY, New York State’s 19-site CSC program indicated lower rates of disability with only 18.3% of individuals followed for two years obtaining disability benefits in this program [29]. These studies are not directly comparable, for example, DUP scores were not available for participants in OnTrackNY and likely were not similar to those of RAISE-ETP participants. Further controlled studies are needed to clarify the impact of CSC on disability outcomes. Another critical area of future research involves understanding the minimum duration of CSC services that are most likely to lead to good outcomes. Given the intensive nature of CSC and often limited resources, it is critical to test strategies for transitioning off CSC to other treatment

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programs. Research that identifies the relative impact of specific elements of CSC for sub-groups or at different phases of treatment will influence policy decisions regarding implementation of CSC. An example involves the effectiveness of scaled back CSC services for rural areas with lower caseloads and workforce shortages. Efforts are also needed to test modifications to CSC that allow for step-down to less intensive services that retain elements critical to the individual’s ongoing recovery. Such approaches will provide critical flexibility and greatly enhance efforts to scale CSC to large populations. Policy makers are encountering a unique convergence of scientific evidence, political will, and funding support for CSC services. Many important decisions must be made to ensure the implementation of successful CSC programs. In the meantime, policy makers should examine multiple strategies to ensure the successful implementation of CSC programs including benefit expansion, coverage modifications, federal subsidies, and federal waiver programs. Federal and state initiatives to expand coverage and access to populations of individuals with FEP have stimulated much innovation, and both public and private payers are considering incentives to support the uptake of CSC. Policy makers should carefully track these efforts to determine what combinations of subsidies, incentives, and new funding streams will be required to implement CSC in their care systems. Policy makers should provide funding and support for a wide range of training, technical assistance, and consumer education resources to support the implementation of CSC programs. The conceptual foundation for CSC is the person-centered, recovery-oriented approach that has wide appeal but in many ways contrasts with the orientation and approaches used in many current mental healthcare systems, and policy makers should not underestimate the need for implementation supports to incentivize uptake of new practices and culture change. Virtual learning communities and learning healthcare system approaches will greatly enhance the likelihood of successful dissemination of CSC. Finally, policy makers should commit to rigorous quality and performance measurement, both at the system level and at the individual provider level. Policy makers should require that fidelity to the CSC model be measured and if supporting modifications to the model, also require that providers document and measure both the modifications and their impact. Standardized measurement of key processes and outcomes should be conducted across the entire CSC provider network. Measurement burden must be limited whenever possible but the lack of system-wide outcome measurement will be a significant threat to the long-term viability of new models of care.

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In sum, there is substantial evidence supporting the positive impact of CSC on a range of outcomes for individuals with FEP. CSC services may reduce DUP and improve functional outcomes and further research will clarify its impact on disability. CSC should be considered standard care for individuals with FEP, making available novel and highly effective services for a vulnerable and deserving population.

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disorders in the U.S. public sector: A pragmatic randomized controlled trial. Psychiatric Services, 66, 705–712. 10. Department of Health. (2000). The NHS plan: A plan for investment, a plan for reform. London: Department of Health. 11. Penttila, M., Jaaskelainen, E., Hirvonen, N., Isohanni, M., & Miettunen, J. (2014). Duration of untreated psychosis as predictor of long-term outcome in schizophrenia: Systematic review and meta-analysis. The British Journal of Psychiatry, 205, 88–94. 12. Schoenbaum, M., Sutherland, J. M., Chappel, A., Azrin, S., Goldstein, A. B., Rupp, A., & Heinssen, R. K. (2017). Twelve-month health care use and mortality in commercially insured young people with incident psychosis in the United States. Schizophrenia Bulletin, 43, 1262–1272. schbul/sbx009. 13. Malla, A. K., Norman, R. M., & Joober, R. (2005). First-episode psychosis, early intervention, and outcome: What have we learned? Canadian Journal of Psychiatry, 50, 881–891. 14. McGorry, P. D., Edwards, J., Mihalopoulos, C., Harrigan, S. M., & Jackson, H. J. (1996). EPPIC: An evolving system of early detection and optimal management. Schizophrenia Bulletin, 22, 305–326. schbul/22.2.305. 15. McGorry, P. D. (2004). Value of early intervention in psychosis. The British Journal of Psychiatry, 185, 172. 16. Malla, A. K., Norman, R. M., Manchanda, R., McLean, T. S., Harricharan, R., Cortese, L., … Scholten, D. J. (2002). Status of patients with first-episode psychosis after one year of phase-specific community-oriented treatment. Psychiatric Services, 53, 458–463. 17. Craig, T. K., Garety, P., Power, P., Rahaman, N., Colbert, S., Fornells-Ambrojo, M., & Dunn, G. (2004). The Lambeth Early Onset (LEO) team: Randomised controlled trial of the effectiveness of specialised care for early psychosis. British Medical Journal, 329, 1067. 18. Garety, P. A., Craig, T. K., Dunn, G., Fornells-Ambrojo, M., Colbert, S, Rahaman, N., … Power, P. (2006). Specialised care for early psychosis: Symptoms, social functioning and patient satisfaction: Randomised controlled trial. The British Journal of Psychiatry, 188, 37–45. bp.104.007286. 19. Jorgensen, P., Nordentoft, M., Abel, M. B., Gouliaev, G., Jeppesen, P., & Kassow, P. (2000). Early detection and assertive community treatment of young psychotics: The Opus study rationale and design of the trial. Social Psychiatry and Psychiatric Epidemiology, 35, 283–287. s001270050240. 20. Petersen, L., Jeppesen, P., Thorup, A., Abel, M. B., Ohlenschlaeger, J., Christensen, T. O., … Nordentoft, M. (2005). A randomised multicentre trial of integrated versus standard treatment for patients with a first

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episode of psychotic illness. British Medical Journal, 331, 602–605. https://doi. org/10.1136/bmj.38565.415000.e01. 21. Global Burden of Disease Study 2013 Collaborators. (2015). Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: A systematic analysis for the Global Burden of Disease Study 2013. Lancet, 386, 743–800. 22. Kane, J. M., Robinson, D. G., Schooler, N. R., Mueser, K. T., Penn, D. L., Rosenheck, R. A., … Heinssen, R. K. (2016). Comprehensive versus usual community care for first-episode psychosis: 2-year outcomes from the NIMH RAISE early treatment program. American Journal of Psychiatry, 173, 362–372. 23. Mueser, K. T., Penn, D. L., Addington, J., Brunette, M. F., Gingerich, S., Glynn, S. M., … Kane, J. M. (2015). The NAVIGATE program for first-episode psychosis: Rationale, overview, and description of psychosocial components. Psychiatric Services, 66, 680–690. ps.201400413. 24. Robinson, D. G., Schooler, N. R., Correll, C. U., John, M., Kurian, B. T., Marcy, P., … Kane, J. M. (2018). Psychopharmacological treatment in the RAISE-ETP study: Outcomes of a manual and computer decision support system based intervention. The American Journal of Psychiatry, 175, 169–179. 25. Addington, J., Heinssen, R. K., Robinson, D. G., Schooler, N. R., Marcy, P., Brunette, M. F., … Kane, J. M. (2015). Duration of untreated psychosis in community treatment settings in the United States. Psychiatric Services, 66, 753–756. 26. Dixon, L. B., Goldman, H. H., Bennett, M. E., Wang, Y., McNamara, K. A., Mendon, S. J., … Essock, S. M. (2015). Implementing coordinated specialty care for early psychosis: The RAISE connection program. Psychiatric Services, 66, 691–698. 27. Nossel, I., Wall, M., Scodes, J., Marino, L., Zilkha, S., Bello, I., … Dixon, L. (2018). Outcomes and predictors in OnTrackNY, a coordinated specialty care program for early psychosis. Manuscript in preparation. 28. Marino, L., Nossel, I., Choi, J. C., Nuechterlein, K., Wang, Y., Essock, S., … Dixon, L. (2015). The RAISE connection program for early psychosis: Secondary outcomes and mediators and moderators of improvement. The Journal of Nervous and Mental Disease, 203, 365–371. nmd.0000000000000293. 29. Humensky, J., Scodes, J., Wall, M., Malinovsky, I., Marino, L., Smith, T., … Dixon, L. (2017). Disability enrollment in a community-based coordinated specialty care program. The American Journal of Psychiatry, 174, 1224–1225.

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30. Rosenheck, R., Mueser, K. T., Sint, K., Lin, H., Lynde, D. W., Glynn, S. M., … Kane, J. M. (2017). Supported employment and education in comprehensive, integrated care for first episode psychosis: Effects on work, school, and disability income. Schizophrenia Research, 182, 120–128. https://doi. org/10.1016/j.schres.2016.09.024. 31. Rosenheck, R. A., Estroff, S. E., Sint, K., Lin, H., Mueser, K. T., Robinson, D. G., … RAISE ETP-Investigators. (2017). Incomes and outcomes: Social Security disability benefits in first-episode psychosis. The American Journal of Psychiatry, 174, 886–894. 32. Grawe, R. W., Falloon, I. R., Widen, J. H., & Skogvoll, E. (2006). Two years of continued early treatment for recent onset schizophrenia: A randomised controlled study. Acta Psychiatrica Scandinavica, 114, 328–336. https://doi. org/10.1111/j.1600-0447.2006.00799.x. 33. Ruggeri, M., Bonetto, C., Lasalvia, A., Fioritti, A., de Girolamo, G., Santonastaso, P., … GET UP Group. (2015). Feasibility and effectiveness of a multi-element psychosocial intervention for first-episode psychosis: Results from the cluster-randomized controlled GET UP PIANO trial in a catchment area of 10 million inhabitants. Schizophrenia Bulletin, 41, 1192–1203. https:// 34. Fusar-Poli, P., McGorry, P. D., & Kane, J. M. (2017). Improving outcomes of first-episode psychosis: An overview. World Psychiatry, 16, 251–265. https://doi. org/10.1002/wps.20446. 35. Anderson, K. K., Norman, R., MacDougall, A., Edwards, J., Palaniyappan, L., Lau, C., & Kurdyak, P. (2018). Effectiveness of early psychosis intervention: Comparison of service users and nonusers in population-based health administrative data. The American Journal of Psychiatry, 1–10. appi.ajp.2017.17050480. 36. Correll, C. U., Galling, B., Pawar, A., Krivko, A., Bonetto, C., Ruggeri, M., … Kane, J. M. (2018). Comparison of early intervention services vs treatment as usual for early-phase psychosis: A systematic review, meta-analysis, and meta-regression. Journal American Medical Association Psychiatry, 75, 555–565. https:// 37. Sigrunarson, V., Grawe, R. W., & Morken, G. (2013). Integrated treatment vs. treatment-as-usual for recent onset schizophrenia; 12 year follow-up on a randomized controlled trial. BioMed Central Psychiatry, 13, 200. https://doi. org/10.1186/1471-244x-13-200. 38. Bertelsen, M., Jeppesen, P., Petersen, L., Thorup, A., Ohlenschlaeger, J., le Quach, P., … Nordentoft, M. (2008). Five-year follow-up of a randomized multicenter trial of intensive early intervention vs standard treatment for patients with a first episode of psychotic illness: The OPUS trial. Archives of General Psychiatry, 65, 762–771. 39. Secher, R. G., Hjorthoj, C. R., Austin, S. F., Thorup, A., Jeppesen, P., Mors, O., & Nordentoft, M. (2015). Ten-year follow-up of the OPUS

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specialized early intervention trial for patients with a first episode of psychosis. Schizophrenia Bulletin, 41, 617–626. 40. Chang, W. C., Kwong, V. W., Chan, G. H., Jim, O. T., Lau, E. S., Hui, C. L., … Chen, E. Y. (2016). Prediction of functional remission in first-episode psychosis: 12-month follow-up of the randomized controlled trial on extended early intervention in Hong Kong. Schizophrenia Research, 173, 79–83. https:// 41. Hegelstad, W. T., Larsen, T. K., Auestad, B., Evensen, J., Haahr, U., Joa, I., … McGlashan, T. (2012). Long-term follow-up of the TIPS early detection in psychosis study: Effects on 10-year outcome. The American Journal of Psychiatry, 169, 374–380. 42. Albert, N., Melau, M., Jensen, H., Emborg, C., Jepsen, J. R. M., Fagerlund, B., … Nordentoft, M. (2017). Five years of specialised early intervention versus two years of specialised early intervention followed by three years of standard treatment for patients with a first episode psychosis: Randomised, superiority, parallel group trial in Denmark (OPUS II). British Medical Journal, 356, i6681. 43. Malla, A., Joober, R., Iyer, S., Norman, R., Schmitz, N., Brown, T., … Abadi, S. (2017). Comparing three-year extension of early intervention service to regular care following two years of early intervention service in first-episode psychosis: A randomized single blind clinical trial. World Psychiatry, 16, 278–286. 44. Albert, N., Melau, M., Jensen, H., Hastrup, L. H., Hjorthøj, C., & Nordentoft, M. (2017). The effect of duration of untreated psychosis and treatment delay on the outcomes of prolonged early intervention in psychotic disorders. Nature Partner Journal Schizophrenia, 3, 34. s41537-017-0034-4. 45. Chan, S. K. W., Chan, S. K. Y., Pang, H. H., Yan, K. K., Hui, C. L. M., Chang, W. C., … Chen, E. Y. H. (2018). Association of an early intervention service for psychosis with suicide rate among patients with first-episode schizophrenia-spectrum disorders. Journal American Medical Association Psychiatry, 75, 458–464. 46. Friis, S., Melle, I., Johannessen, J. O., Rossberg, J. I., Barder, H. E., Evensen, J. H., … McGlashan, T. H. (2016). Early predictors of ten-year course in first-episode psychosis. Psychiatric Services, 67, 438–443. https://doi. org/10.1176/ 47. Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: A review of evidence and experience. World Psychiatry, 11, 123–128. 48. Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E. (2014). Peer support services for individuals with serious mental illnesses: Assessing the evidence. Psychiatric Services, 65, 429–441.

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49. Department of Health and Human Services. (n.d.). Complex technologies and therapeutics development for mental health research and practice (R43/ R44). Accessed November 23, 2017. 50. Connor, C., Birchwood, M., Freemantle, N., Palmer, C., Channa, S., Barker, C., … Singh, S. (2016). Don’t turn your back on the symptoms of psychosis: the results of a proof-of-principle, quasi-experimental intervention to reduce duration of untreated psychosis. BioMed Center Psychiatry, 16, 127. https://doi. org/10.1186/s12888-016-0816-7. 51. Lucksted, A., Essock, S. M., Stevenson, J., Mendon, S. J., Nossel, I. R., Goldman, H. H., … Dixon, L. B. (2015). Client views of engagement in the RAISE connection program for early psychosis recovery. Psychiatric Services, 66, 699–704. 52. Lucksted, A., Stevenson, J., Nossel, I., Drapalski, A., Piscitelli, S., & Dixon, L. B. (2016). Family member engagement with early psychosis specialty care. Early Intervention in Psychiatry, 1–6. 53. National Institute of Mental Health. (2014). Coordinated specialty care for first episode psychosis—Manual I: Outreach and recruitment. https://www.nimh.nih. gov/health/topics/schizophrenia/raise/coordinated-specialty-care-for-first-episode-psychosis-manual-i-outreach-and-recruitment.shtml. Accessed November 23, 2017. 54. Agency for Healthcare Research and Quality. (n.d.). Consumer Assessment of Healthcare Providers and Systems (CAHPS). html. Accessed November 23, 2017. 55. University of Washington Department of Psychiatry & Behavioral Sciences. (n.d.). Mental Health Statistics Improvement Program (MHSIP) Surveys. https:// Accessed November 23, 2017. 56. Agency for Healthcare Research and Quality. (2016, May). Experience of Care & Health Outcomes (ECHO). echo/index.html. Accessed November 23, 2017. 57. Simon, G. E., Stewart, C., Hunkeler, E. M., Yarborough, B. J., Lynch, F., Coleman, K. J., … Carrell, D. S. (2018). Care pathways before first diagnosis of a psychotic disorder in adolescents and young adults. The American Journal of Psychiatry. 58. New York City Department of Health and Mental Hygiene. (n.d.). New York City Supportive Transition and Recovery Team (NYC START). https://www1. Accessed November 23, 2017. 59. Simon, G. E., Coleman, K. J., Yarborough, B. J. H., Operskalski, B., Stewart, C., Hunkeler, E. M., … Beck, A. (2017). First presentation with psychotic symptoms in a population-based sample. Psychiatric Services, 68, 456–461.

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60. Ford, E. (2015). First-episode psychosis in the criminal justice system: Identifying a critical intercept for early intervention. Harvard Review of Psychiatry, 23, 167–175. 61. Donabedian, A. (1988). The quality of care: How can it be assessed? Journal American Medical Association, 260, 1743–1748. jama.1988.03410120089033. 62. Elbogen, E. B., Van Dorn, R. A., Swanson, J. W., Swartz, M. S., & Monahan, J. (2006). Treatment engagement and violence risk in mental disorders. British Journal of Psychiatry, 189, 354–360. bp.105.017913. 63. Fazel, S., Zetterqvist, J., Larsson, H., Langstrom, N., & Lichtenstein, P. (2014). Antipsychotics, mood stabilisers, and risk of violent crime. The Lancet, 384, 1206–1214. 64. Smith, T., Myers, R., Sederer, L., & Berezin, J. (2016). How value-based payment arrangements should measure behavioral health. Health Affairs Blog. https:// 65. PhenX Toolkit, Version 22.1. (2018, January 18). Early Psychosis Translational Research Specialty Collection. Accessed February 19, 2018. 66. Burstin, H., Leatherman, S., & Goldmann, D. (2016). The evolution of healthcare quality measurement in the United States. Journal of Internal Medicine, 279, 154–159. 67. Radhakrishnan, M., McCrone, P., Lafortune, L., Everard, L., Fowler, D., Amos, T., … Birchwood, M. (2017). Cost-effectiveness of early intervention services for psychosis and fidelity to national policy implementation guidance. Early Intervention in Psychiatry, 1–10. 68. Bennett, M., Piscitelli, S., Goldman, H., Essock, S., & Dixon, L. (2014). Coordinated specialty care for first episode psychosis—Manual II: Implementation. Rockville, MD: National Institute of Mental Health. https://www.nimh.nih. gov/health/topics/schizophrenia/raise/csc-for-fep-manual-ii-implementation-manual_147093.pdf. Accessed November 23, 2017. 69. Centers for Medicare & Medicaid Services (CMS). (n.d). Authorities for home and community based services. medicaid/hcbs/authorities/index.html. Accessed November 24, 2017. 70. Musumeci, M. (2017, November). Issue brief: Key themes in Medicaid Section 1115 behavioral health waivers. Menlo Park, CA: The Henry J. Kaiser Family Foundation. Accessed March 12, 2018. 71. Centers for Medicare & Medicaid Services (CMS). (2016). Medicaid and Children’s Health Insurance Program (CHIP) programs; Medicaid managed care, CHIP delivered in managed care, and revisions related to third party liability. Federal Register, 81, 27497–27901. https:// w w w. f e d e r a l r e g i s t e r. g o v / d o c u m e n t s / 2 0 1 6 / 0 5 / 0 6 / 2 0 1 6 - 0 9 5 8 1 /

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medicaid-and-childrens-health-insurance-program-chip-programs-medicaid-managed-care-chip-delivered. Accessed November 24, 2017. 72. Frank, R. G., Glied, S. A., & McGuire, T. G. (2015). Paying for early interventions in psychoses: A three-part model. Psychiatric Services, 66, 677–679. 73. Humensky, J. L., Dixon, L. B., & Essock, S. M. (2013). State mental health policy: An interactive tool to estimate costs and resources for a first-episode psychosis initiative in New York State. Psychiatric Services, 64, 832–834. https:// 74. Essock, S. M., Goldman, H. H., Hogan, M. F., Hepburn, B. M., Sederer, L. I., & Dixon, L. B. (2015). State partnerships for first-episode psychosis services. Psychiatric Services, 66, 671–673. 75. Bello, I., Lee, R., Malinovsky, I., Watkins, L., Nossel, I., Smith, T., … Dixon, L. B. (2017). OnTrackNY: The development of a coordinated specialty care program for individuals experiencing early psychosis. Psychiatric Services, 68, 318–320. 76. Wachino, V., Insel, T., & Enomoto, K. (2015, October 16). Coverage of early intervention services for first episode psychosis. Centers for Medicare & Medicaid Services (CMS). cib-10-16-2015.pdf. Accessed November 24, 2017. 77. Goldman, H. H., Karakus, M., Frey, W., & Beronio, K. (2013). Economic grand rounds: Financing first-episode psychosis services in the United States. Psychiatric Services, 64, 506–508. 78. Srihari, V. H., Tek, C., Pollard, J., Zimmet, S., Keat, J., Cahill, J. D., … Woods, S. W. (2014). Reducing the duration of untreated psychosis and its impact in the US: The STEP-ED study. BioMed Center Psychiatry, 14, 335. 79. Heinssen, R. K. (2018, January 25). NAMHC concept clearance: Research to inform stepped-care interventions for persons at clinical high risk for psychosis. National Institute of Mental Health. grant-writing-and-application-process/concept-clearances/2018/research-to-inform-stepped-care-interventions-for-persons-at-clinical-high-risk-for-psychosis. shtml. Accessed February 19, 2018. 80. van der Gaag, M., Smit, F., Bechdolf, A., French, P., Linszen, D. H., Yung, A. R., … Cuijpers, P. (2013). Preventing a first episode of psychosis: Metaanalysis of randomized controlled prevention trials of 12 month and longerterm follow-ups. Schizophrenia Research, 149, 56–62. schres.2013.07.004. 81. van der Gaag, M., van den Berg, D., & Ising, H. (2017). CBT in the prevention of psychosis and other severe mental disorders in patients with an at risk mental state: A review and proposed next steps. Schizophrenia Research, 1–6.

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12 Policy Effects on Mental Health Status and Mental Health Care Disparities Jeanne Miranda, Lonnie R. Snowden and Rupinder K. Legha

12.1 Framing the Issue From a health policy perspective, disparities in mental health status and mental health care deserve special focus. Mental health policy could result in improved mental health for some of our most vulnerable citizens by improving access to care and eliminating broader social policies that increase mental health problems among minority populations. Mental health disparities, in particular, do not conform to the pattern seen for most health disparities and have unique issues that are important to consider. For example, ethnic minorities have lower rates of mental disorders than do majority populations, but higher rates of physical disorders [1]. In this chapter, we consider policies that impact mental health status and mental healthcare disparities by focusing on three major groups: ethnic and racial minorities, sexual and gender minorities, and undocumented immigrants. J. Miranda (*) · R. K. Legha  Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, CA, USA J. Miranda  Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, CA, USA L. R. Snowden  Health Policy and Management Division, School of Public Health, University of California, Berkeley, CA, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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12.1.1 What Are Mental Health Status and Mental Healthcare Disparities? Two distinct referents of the term ‘disparities’ need to be clearly distinguished and defined as a basis for discussing the key policy issues considered in this chapter. Mental Health Status Disparities Currently, no consensus exists for defining and measuring health status disparities. Many definitions of disparity overlap, focusing on one aspect or another of what is meant. We do not consider all differences between diverse groups to be disparities. Rather, we define a mental disparity as any inequality in mental health status or health care due to social factors or allocation of resources. As such, a mental health disparity between ethnic or racial groups that is due to higher rates of poverty or fewer mental health resources in poor neighborhoods would be considered a disparity [1]. Conversely, the difference in depression rates between two populations that is due to gender differences would not be considered a disparity. A disparity between sexual and gender minorities and those who are not such minorities that is due to discrimination would be considered a disparity. Mental Healthcare Disparities In accord with the Institute of Medicine’s (now the National Academy of Medicine) Unequal Treatment, we define disparities in mental health care as differences between racial–ethnic minority groups and Whites that are attributable to socioeconomic factors and insurance but not to health status and treatment preferences [2]. This definition recognizes that health status differences, such as the lower rates of depression found among African Americans and Hispanics than among White Americans, should be adjusted for or balanced across racial–ethnic groups in determining whether lower service use is truly a disparity or only reflective of lower need [1]. On the other hand, disparities in care accounted for by socioeconomic factors, such as income or insurance, remain an important part of the picture and should be included in the disparity calculation [3].

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12.1.2 Landmarks for Documenting Mental Health Status and Mental Healthcare Disparities Over the past thirty years there have been a number of landmark occurrences associated with the publication of policy reports, legislation, and the creation of new federal agencies that have underscored the presence and scope of disparities in the mental health arena. Ethnic and Racial Minorities The concern with mental health status and mental healthcare disparities for ethnic and racial minorities is part of a wider concern with disparities in general health care that has gained increasing momentum over the past 30 years [1, 2, 4]. Early reports, such as the 1985 Secretary’s Report on Black and Minority Health [5], paved the way for The Federal Office of Disease Prevention and Health Promotion’s Healthy People initiatives, which emphasized decreasing health disparities [6], and the creation of the National Center on Minority Health and Health Disparities, which promotes the NIH disparities research agenda aimed at eliminating health and healthcare disparities [7]. Two documents have proven particularly influential in understanding mental health status and healthcare disparities for ethnic and racial minorities. Culture, Race, and Ethnicity: A Supplement to the Surgeon General’s Report on Mental Health, published in 2001, drew attention to mental health disparities and emphasized that culture does impact mental health, with minority cultures of origin appearing to be protective of mental health [8] even though lack of access leads to persistent disparities in mental health care. The Institute of Medicine’s 2002 report on Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care received wide attention for its comprehensive documentation of disparities and for presenting the rigorous definition for measuring healthcare disparities noted above [2]. Gender and Sexual Minorities The 2011 Institute of Medicine Report, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better

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Understanding” [9] was particularly influential in understanding the health needs of gender and sexual minority populations. Although the report argues that much more high-quality research is needed to identify the health needs of gender and sexual minorities, disparities in both health and mental health were identified. Undocumented Immigrants There have been no landmark documents drawing attention to mental health disparities affecting undocumented immigrants. However, the Trump administration’s recent decision to separate young children from their parents who cross the border illegally or seek asylum generated unanimous outrage from medical and mental health organizations [10]. For example, the National Academies of Sciences, Engineering and Medicine, the country’s premier source of unbiased medical information, issued an unequivocal statement outlining the known harms from such separations [10]. The extent to which this response will generalize to concern about the mental health of undocumented immigrants in general is still unknown, but the unprecedented response from professional organizations is notable.

12.1.3 Policy Relative to Mental Health Status and Mental Healthcare Disparities Despite landmark efforts to document the existence of disparities, less attention than is warranted has been paid to considering mental health and mental healthcare disparities from a policy perspective. Such an analysis can serve as a guide for informing policies that might reduce disparities, or consider the possibilities of disparity reductions that might occur as a side effect of interventions targeting health-related, legal, or social factors. Given recent policy decisions related to health care, immigration, and marriage equality, for example, this type of analysis is timely.

12.1.4 Presence and Scope of Disparities in Mental Health Status and Mental Health Care In this chapter, we examine mental health status and mental healthcare treatment disparities from a policy perspective as they relate to racial and ethnic minorities, sexual and gender minorities, and undocumented

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individuals in the United States. We begin by identifying the known disparities in mental health status and mental health care. Ethnic and Racial Disparities in Mental Illness Several large, national epidemiologic studies of mental disorders have included ethnic minorities [11–15]. The Collaborative Psychiatric Epidemiology Survey program funded by the National Institute of Mental Health used common core questions and unified sampling weights to examine rates of mental disorders among different ethnic groups. In these studies, Hispanic Americans (with the exception of those from Puerto Rico), Asian Americans, and Black Americans had fewer mental disorders than do White Americans [16–18]. Similarly, compared with a nationally representative sample of the US population, American Indians are at heightened risk for post-traumatic stress disorder and alcohol dependence, but at lower risk for depression [19]. However, more Black Americans may have schizophrenia, a rare but very serious condition, than White Americans [12]. While substantial evidence exists to suggest that clinicians over diagnose schizophrenia and under diagnose mood disorders in African Americans [12], clinical decisions do not account for all of the observed differences. African Americans, Latinos, and Native Americans have higher poverty rates than White Americans, and poverty is strongly related to mental illness [8]. Because there are proportionally more minority and impoverished members of these groups where mental illness rates are highest, African Americans, Latinos, and Native Americans are more likely to be both poor and mentally ill [8]. They are likely to be more affected by the consequences of living with mental illness and poverty than are more advantaged White populations. Mexican, African, and Caribbean immigrants have much lower rates of disorders than do their nonimmigrant counterparts, but rates of disorders increase with time spent in the United States [14, 15]. Despite the lower rates of disorders found in minority populations as a whole, discrimination plays a role in the mental health problems ethnic minorities experience [20]. A meta-analysis of 134 studies found that perceived discrimination is associated with psychiatric distress, overall well-being, and increased odds of mental illness [20]. These studies are largely cross-sectional, making inferences about causation impossible. However, the few longitudinal studies in the area suggest that discrimination does predict later psychiatric distress [20].

336     J. Miranda et al. Racial and Ethnic Minority Disparities in Mental Health Care Racial and ethnic populations have traditionally had poorer access to mental health care than do majority populations [1], and lack of insurance coverage plays a notable role. These disparities have been documented over time, such that significant disparities in access to mental health care and psychotropic medication use increased from 2004–2005 to 2011–2012 for African Americans, Latinos, and Asians as compared with White Americans [21]. When potential mental healthcare seekers were directly asked what prohibited them from obtaining care, they reported financing concerns are a leading barrier to receiving mental health care [22]. Ethnic minorities cite cost or lack of insurance coverage more than any other reason for not seeking mental health treatment [8]. Insurance coverage alone is no panacea for mental healthcare disparities: placement of clinics in minority neighborhoods [8], outreach and education [1, 8], diversifying the mental healthcare workforce [1], and other interventions also are keys to effective disparity reduction. Nevertheless, cost and lack of insurance coverage are significant barriers for ethnic minority persons as much as Whites [23]. Poverty status strongly mediates Hispanic-White and African American– White disparities in mental health specialty care [24]. Acculturation (measured by English proficiency, nativity, and years in the United States), national origin, and insurance status affect service utilization among African American, Asian, and Hispanic subgroups [16, 25, 26] and in part mediate racial–ethnic disparities. Clearly, those who are poor or are less adapted to US culture get less mental health care than do those with more resources and acculturation. Geographic proximity to sources of care is an important but often overlooked determinant of receiving mental health treatment [27]. Distance increases travel time and transportation difficulties, as well as increasing feelings of estrangement and of being unwelcome in places farther removed from one’s local environment [27]. In several studies, the presence of fewer programs and providers has been associated with lower mental health service utilization rates [28]. Ethnic minority persons disproportionately reside in areas served by relatively few mental healthcare providers and programs. Thus, greater racial and ethnic minority composition of neighborhoods has proven to be negatively associated with the presence of psychiatrists and psychiatric services, as well as having fewer treatment programs accepting Medicaid [29]. In addition, the overall mental health treatment workforce is predominantly White, with serious underrepresentation of ethnic minorities [8].

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Also, psychiatrists are significantly less likely to accept Medicaid than are non-psychiatric physicians [30]. The lack of availability of appropriate, accessible services clearly plays an important role in mental healthcare disparities.

12.1.5 Sexual and Gender Minority Disparities in Mental Health Status Few studies drawing from national data sets are available to examine the rates of mental disorders among sexual and gender minority populations. The few national epidemiologic studies available have shown significantly higher rates of mental disorders among sexual and gender minorities as compared with heterosexual persons [31, 32]. Lesbian, gay, bisexual, mostly heterosexual and questioning individuals have reported elevated mental health problems when compared to heterosexual individuals. Bisexual individuals have larger effects than homosexual individuals [33, 34]. Several studies have reported larger effects among men than women [33–35]. Specific mental disorders that are disproportionately higher among sexual and gender minorities are anxiety [32, 36], depression [32, 36], alcohol/substance abuse [32, 36, 37], and suicide [35, 38, 39]. Suicidal behavior is a particular concern among sexual minority youth [9, 40]. Sexual minority youth report significantly higher rates of suicidality compared to heterosexual youth [35, 38]. Disparities increase with severity of suicidality [38]. The rate of suicide is nearly three times greater for sexual and gender minority youth and over two times greater for questioning youth [41]. Unique difficulties are faced by these populations as a result of societal intolerance and marginalization [9, 40, 42]. Problems such as internalized homo-negativity (i.e., negative beliefs and feelings about one’s sexual orientation) are a part of normative developmental processes for many sexual and gender minority youth [43].

12.1.6 Sexual and Gender Minority Disparities in Mental Health Care Little is known about mental healthcare trends over time for sexual and gender minority individuals. Very few studies of sexual and gender minority individuals have looked at mental health services use. However, several recent studies draw upon large national data sets and find that sexual minority individuals utilize mental health services at higher rates than heterosexuals [44]. This greater likelihood of treatment persists regardless of whether there is a diagnosable disorder [45].

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12.1.7 Disparities in Mental Health Status of Undocumented Individuals and Asylum-Seekers Undocumented individuals, defined as those people who arrive in the United States without the appropriate legal documents, experience disproportionately higher rates of mental disorders [46]. This applies to both asylum-seeking individuals pursuing refuge in a foreign country due to economic hardship or those fleeing political strife in their home countries. Because of the difficulty of soliciting sensitive information from such vulnerable populations, data is understandably limited [47]. However, several systematic reviews, for example Garcini et al. [47] have found a greater prevalence of mental disorders among undocumented or asylum-seeking individuals when compared to either the general population or documented immigrants. This increased prevalence of mental health disorders appears to be related to the significantly increased burden of psychosocial stressors these vulnerable populations face in the pre-migration, transit, and arrival phases of their experience [47, 48]. Undocumented and asylum-seeking individuals often survive on meager resources [49] and experience difficulty obtaining work [50], accessing health care [51], and evading immigrant-related legal problems. They may live in a constant state of fear of being deported [47, 48]. Limited social supports, experiences of discrimination, the risk of exploitation (for labor and human trafficking), and hostile social and political climates compound these challenges [49].

12.1.8 Disparities in Mental Health Care for Undocumented Individuals and Asylum-Seekers In addition to their increased burden of mental illness and psychosocial stressors [46, 52, 53], undocumented individuals have to traverse significant barriers to access health care [51]. Policy-level barriers include barred access to insurance due to documentation status [51] and the need to show documentation to obtain services; health system barriers include lack of transportation [49], discrimination by the healthcare system [51], community health centers (CHC)’s long waitlists [54], and denied care in the emergency room or in CHCs [55]; and individual-level barriers include fear of deportation [55], language barriers [56], lack of financial resources to pay medical fees [51], and experiences of shame or stigma [51, 57]. As a result of these various barriers, undocumented individuals use mental health services

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at significantly lower rates than nonimmigrants, despite an equal or greater need [57]. Ortega et al. [58] conducted a large survey of over 40,000 individuals in California that found that undocumented Latinos used healthcare services less and reported poorer experiences with care compared with their US-born counterparts. Decreasing mental health disparities in undocumented individuals and asylum seekers would likely benefit most from looking beyond mental health care to social discriminatory policies.

12.2 Questions 12.2.1 What Policies Are Necessary to Eliminate Well-Documented Disparities for Minority Populations in Mental Health Status and Mental Health Care that Have Persisted Over Time? This question involves determining the impact, or potential impact, of policies directly relevant to mental health care, as well as examining the impact of social policies as they relate to the social determinants that directly influence mental health status and or undermine capacity of minority individuals to engage in care (e.g. immigration policies that increase anxiety and marginalization in targeted minority communities). For ethnic and racial minorities, sexual and gender minorities, and undocumented immigrants, mental health disparities must be examined within the contextual factors that influence their lives, mental health and service use. Some factors affecting minorities today originated in tragic historical episodes such as the American Indian genocide, slavery, and the racist laws and policies in the aftermath of those atrocities [8]. American Indians/ Alaskan Natives experience high poverty rates and poor mental health outcomes linked to policies such as forced relocation, separation of families, and assimilation programs, such as boarding schools, designed to terminate tribal cultural identity and prohibit tribal religions [59]. Federal programs prohibited the practice of Native religions in the United States until 1978. The inclusion of homosexuality in the Diagnostic and Statistical Manual of Mental Disorders until 1973 shaped sexual minority patients’ interactions with the healthcare system [60]. These historical factors compound the high rates of discrimination that ethnic, racial, sexual and gender minority populations continue to report today [18].

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12.2.2 What Policies Could Eliminate Mental Health Status and Mental Healthcare Disparities for Minorities? Historical antecedents suggest that strategies to reduce or eliminate disparities should logically focus on access to care but must also consider broader social policies that are disproportionately deleterious to minority individuals. Eliminating disparities in insurance status would provide access to care for minority populations. However, further interventions would be necessary to mitigate minorities’ distrust of majority-dominated systems of care in order to improve treatment engagement. The enduring structural impact of racism, homophobia and transphobia, amplified by unconscious and implicit biases embedded throughout the medical system, has eroded trust in medical systems among many minority populations and diminished their quality of health care. For example, ethnic minorities who do seek mental health care are much less likely to get high-quality care than are their White counterparts [8]. Therefore, policies must address a broader array of concerns of minority communities in order to eliminate mental health status and mental healthcare disparities and to promote well-being. There are multiple contemporary examples of how broader discriminatory policies that create social, economic, and educational disadvantage for vulnerable populations result in risk factors for mental illness. Policies that separate immigrant children and parents due to detainment, deportation, or differing citizenship status could have a negative influence on the mental health status of these populations, particularly the early development and psychological well-being of the children involved [10]. Over-policing and disproportionately punishing racial and ethnic and sexual and gender minority youth in community and school settings leads to lower academic achievement and overrepresentation in juvenile justice and eventually in prison settings [61]. Their life trajectories and mental health status are permanently altered as a result. Previous laws banning gay marriage in certain states proved to increase mood anxiety, and substance abuse disorders for gay and lesbian populations in those states as compared with heterosexual populations in the same states [62], demonstrating the deleterious effects on mental health of discriminatory policies. Police brutality and police killings of unarmed African Americans has similar adverse effects on the mental health status of African Americans [46, 63]. Overall, minority group members experience chronic stress arising from their stigmatization [20, 42]. This includes both the objective stressors in the experience of discrimination and violence, as well as subjective processes such as the individual’s self-directed stigma, reflecting the adoption of

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society’s negative attitudes about their minority status [20]. Discriminatory policies increase mental health problems in these populations. Policies that improve access to care; mitigate historical inequalities and biases faced by minority populations, as well as those that eliminate the ongoing discriminatory policies that continue to affect their well-being could vastly decrease both mental health status and mental healthcare disparities.

12.3 Evidence Mental healthcare disparities for racial and ethnic minority populations [64] and mental health status disparities for sexual and gender minority populations have been documented over time without significant reductions noted in either. Prior healthcare strategies, including attempts to increase diversity, develop cultural competency, and adapt evidence-based practices to meet these populations needs, have not succeeded in decreasing disparities [8]. These efforts have included, for example, diverse workforce development initiatives, such as loan forgiveness or fellowships aimed at minority clinicians. In another example, the State of California increased the type of mental health professional counselors and interns who are eligible for grants to reimburse educational loans for working in medically underserved areas. National efforts such as increasing high-quality community-based care through CCBHC (Certified Community Behavioral Health Clinics), as well as efforts to include mental health in behavioral health care under the Affordable Care Act (ACA) are aimed at decreasing disparities. To date, these efforts have not been shown to eliminate disparities. Policy solutions could decrease disparities by increasing access to quality care, as well as decreasing social inequalities and discriminatory policies that adversely affect minorities [1, 8]. We will consider a broad range of policy choices that could potentially decrease disparities in mental health care for ethnic minorities [1]; increase access to quality care; protect vulnerable sexual and gender minority youth [8]; enhance safety net options [65]; and educate immigrants about their rights and eligibility to use healthcare services [44, 48].

12.3.1 Treatment Access and Quality Because both psychiatric medications and psychotherapies are effective for African American and Latino patients [66], with emerging evidence for Asians [67], the key to reducing mental healthcare disparities for ethnic and

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racial minorities rests less in the promise of new treatments than in understanding how to implement and sustain existing treatments in high need communities, as well as educating and engaging those community members with need for care who are not currently in the system [1, 8]. Little evidence is available to determine the impact of evidence-based care for sexual and gender minorities, but there are clear needs for specialized care [9, 40, 42] that addresses critical issues such as youth suicidality [9, 35, 38, 40]. Access to and quality of care can be different for minority as opposed to majority populations [4, 8, 31, 32]. Because of historic racism, homophobia, and transphobia within the healthcare system, approaches must involve developing trust within minority communities for systems of care. A major issue for racial and ethnic minorities is our ability to engage these individuals from underserved populations into care [8]. The process of mental health engagement begins with the identification of a mental health problem and the belief that engaging in care would help with this problem. Next, the decision about whether to seek care and whether care is available impacts disparities [8]. Finally, ongoing decisions to remain involved in treatment are necessary [68]. Optimal treatment often involves continuity of care, especially for chronic mental disorders [69]. Treatment engagement is a broad process that involves encouraging recognition of need for care and seeking care [68], as well as continuing in needed aspects of care [69]. Evidence suggests that we are less able to engage ethnic minorities across a wide range of indices, including whether formal treatment is sought [70], number of visits [71], retention in treatment [72], follow-up with aftercare subsequent to inpatient discharge [72] and psychotropic medication adherence [73]. Evidence suggests that collaborative care increases engagement in care across these domains [74]. Quality improvement interventions for depression in primary healthcare settings have been shown to decrease mental health status disparities for African American and Latino adults and youth [75, 76]. As noted earlier, sexual and gender minority individuals tend to access care more than do others. Societal and internalized homophobia and transphobia may affect access to appropriate care. The optimal provision of mental health care to sexual and gender minorities requires providers to be sensitive to historical stigmatization, to be informed about continued barriers to care, as well as understanding the differential risk factors and health conditions of these populations. Access to mental health care is a critical issue for undocumented populations. Approximately 11 million to 12 million undocumented individuals live in the United States, with 75% being Latin American. The primary

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sources of health insurance in the United States are unavailable to these individuals. Although approximately 80% of undocumented immigrants are in the labor force, most are in fields that do not provide insurance. They are explicitly excluded from Medicaid, except for the rare instances of Emergency Medicaid. As a result, there are huge disparities in access to care for this population as compared with US citizens.

12.3.2 Long-Term Consequences of Minority Mental Health Status Disparities Disparities in access and quality of care lead to a variety of negative consequences for the mental health well-being and social welfare needs of minority populations. Negative Outcomes for Ethnic Minority Populations Although minorities have fewer psychiatric disorders than do White Americans, both Black and Hispanic Americans are more likely to be persistently ill [1]. For example, Black Americans have more disabling and persistent depression than do White Americans [1]. This could influence disability disparities. Approximately 14.4% of African Americans report themselves disabled, compared to 12.6% of the general population [77]. Furthermore, 12% of the US adult population is African American, whereas, 17% are beneficiaries of Social Security Disability Insurance (SSDI) [78]. White Americans are equally represented in the population and SSDI roles. Persistent, untreated mental disorders could certainly influence these negative outcomes. The impact of untreated mental disorders on the course of medical problems, such as diabetes, is well known [79]. Clearly, the failure to provide adequate mental health care for these disparities populations can negatively impact their health. Public policies such as the War on Drugs negatively impacted the mental health status of ethnic minorities in the United States and further compounded the long-term consequences of mental health disparities. According to the Bureau of Justice Statistics, in 2011, nearly half of the inmates in federal prisons were serving time for drug offenses [80]. The NAACP reported that, though African Americans and Hispanics made up approximately 32% of the US population, they comprise 56% of all incarcerated people in 2015 [81]. They are incarcerated at more than five times the rate of Whites [81]. The imprisonment rate for African American

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women is twice that of White women [81]. Mental health challenges arise as a result of incarceration [82]. According to estimates from the National Survey of Drug Use and Health, African Americans, Latinos, and Native Americans with untreated mild and moderate mental illness were more likely than Whites to have been arrested in the past year [13]. Clearly, disparities in mental health care for African Americans and Latinos exacerbates the negative impact of criminal justice involvement and the subsequent negative outcomes associated with having a criminal record. Policies that could decrease disparities would need to go beyond health care. The Institute of Medicine estimates that only five years of the thirtyyear increase in life expectancy over the past century can be attributed to health care [83]. Social policies that decrease inequities in housing, education and income support are likely necessary to decrease disparities [84]. These policies must both effect change and be effective for minorities to decrease disparities. Negative Outcomes for Sexual and Gender Minorities For sexual and gender minority populations, discriminatory policies continue to undermine mental health. For example, twelve states have policies that deny services to same-sex couples, something recently upheld by the Supreme Court. In comparing lesbian and gay adults in states permitting denial of services to similar populations in states without such laws, the laws are associated with a 46% increase in sexual minority adults experiencing mental distress [62]. These discriminatory policies clearly engender poorer mental health status for gay men and lesbian women. Evidence suggests that youth gay-related suicide attempts are associated with how identifiable the youth is as sexual and gender minority, especially by parents [85]. Although exact estimates of parental rejection of sexual and gender minority youth are unknown, evidence does suggest that some parental rejection is severe. Failure to adequately address the mental health needs of sexual and gender minority youth and their families likely impacts their lives in very negative ways. The Williams Institute found that sexual and gender minority youth represent between 30 and 43% of those served by homeless programs [86]. They comprise 19 percent, or nearly one in five, foster youth in Los Angeles County, a much higher percentage than youth who identify as sexual or gender minority who are not in foster care (7–8%) [87]. Sexual and gender minority youth are overrepresented in the US juvenile justice system, the majority of whom are youth of color [88]. It is

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estimated that nearly 40% of girls in detention identify as lesbian and bisexual [89] and 12% are transgender or gender nonconforming [88]. Researchers posit that a combination of social vulnerabilities and inequitable treatment in a variety of settings effectively tracks sexual and gender youth of color out of their homes and schools and into the juvenile justice system [90, 91]. Gay and lesbian youth are more likely than their non-gay and lesbian peers to report arrests for survival strategies such as sex work, substance use, running away, and truancy [88, 90]. Sexual and gender minority youth in detention report higher rates of past victimization, home removal, child welfare system involvement, and homelessness when compared to their non-sexual and gender minority peers [88]. Clearly, the failure of the mental health system, along with other systems, to address the needs of these youth and their families result in many ending up in county systems, such as foster care and juvenile justice, with known negative outcomes. Negative Outcomes for Undocumented Immigrants For the hundreds/thousands of children recently separated from their parents at the border, the lasting consequences of toxic stress, particularly if they are never reunited with their parents, are yet to be determined. However, a growing body of literature demonstrating a relationship between immigration policies and undocumented individuals’ access to health services and psychological well-being is instructive [46, 92]. For example, a study by Toomey et al. (2014) demonstrated that passage of Arizona’s “Supporting Our Law Enforcement and Safe Neighborhoods Act” (SB 1070, enacted July 29, 2010) resulted in adolescent mothers’ decreased use of public assistance, decreased likelihood of taking their infants to the doctors, and diminished use of preventive health care among younger adolescents [93]. Similarly, Section 287(g) of the Immigration and Nationality Act and the Secure Communities program, which authorizes local law enforcement agencies to enforce federal immigration laws, caused Latina mothers in North Carolina to seek prenatal care later, due to profound mistrust of health services providers and structures [94]. Conversely, passing pro-immigration policy can mitigate distress and enhance health-seeking behaviors. The Deferred Action for Childhood Arrivals (DACA) is a policy measure that, as of 2017, has allowed 800,000 individuals who entered the country as minors or remained in the country illegally to receive a renewable two-year period of deferred action from deportation and to be eligible for a work permit [95]. DACA beneficiaries

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and the children of DACA-eligible mothers showed significant improvements in psychological well-being after the program’s implementation [46, 96]. DACA potentially improved health outcomes be amplifying economic stabiling and educational opportunities, strengthening social and community contexts, and improving access to care. Rescinding DACA—in conjunction with rising anti-immigration sentiment and policy (such as an immigration ban and increased risk for deportation)—would likely have adverse population-level effects on mental health status by increasing psychological distress, exacerbating mistrust, and revoking access to health insurance (through loss of job permits), thereby decreasing Dreamers’ likelihood of pursuing mental health care [96].

12.3.3 Impact of Current Policies Intended to Decrease Disparities in Mental Health Status and Mental Health Care Several policy initiatives undertaken in the past several years have affected the mental health status and mental healthcare needs of minority populations. Affordable Care Act Despite efforts of the Trump administration to dismantle and replace the ACA, there is good evidence that minorities have benefitted from these health insurance initiatives.

Racial and Ethnic Minorities The ACA’s objective was universal coverage, requiring that everyone maintain coverage (“individual mandate”). The ACA facilitated increased coverage in several ways, by: (1) requiring that employers of more than 50 Full Time Equivalent Workers offer coverage [98], (2) eliminating restrictions on coverage due to preexisting conditions [98], (3) extending coverage for dependent adult children up to age 26 under a parent’s plans [98], (4) offering to expand Medicaid to cover everyone with incomes below 138% of the federal poverty level if individual states agreed, with generous federal support, and (5) by establishing health insurance marketplaces for purchase of coverage, with premium and cost-sharing subsidies for persons with incomes between 100 and 400% of the federal poverty level [98]. Mental health coverage is among the essential benefits that insurance plans are required to

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cover and because of “parity” requirements, coverage for mental health and general health conditions are required to be equal. Thus, the ACA holds out great promise to reduce what is a substantial unmet need for mental health care among ethnic and racial minority populations [99]. Before implementation of the ACA, uninsured rates were highest among those who did not qualify for disability or for income-based public insurance [100]; minorities are overrepresented among these groups [101, 102]. In 2012 before the ACA expanded Medicaid, uninsured rates for persons under age 65 were 12.7% for Whites, 16.4% for Asian American, 17.9% for African American, and 30.4% for Latinos [102, 103]. In 2018, uninsured rates dropped to 7.8% for Whites and 5.1% Asian Americans, but remained at 11.3% for African Americans, and 18.1% for Latinos [102, 103]. The ACA provided coverage for many, but some disparities remained [23]. African Americans are overrepresented in states that did not expand Medicaid [104], and undocumented Latinos are not eligible for these funds [105]. The ACA improved coverage rates for everyone and lowincome people in particular, but it increased coverage rates for Latinos and Asian Americans especially. Only for African Americans were disparities unchanged. This is because, more than Latinos, Asian Americans, and Whites, African Americans are overrepresented in states that did not accept Medicaid expansion. To ease the burden of purchasing and using coverage to obtain health care, purchase and cost-sharing subsidies were made available on a sliding scale as part of the ACA. Due to higher rates of poverty and near-poverty among African Americans, Native Americans, and Latinos and some Asian American groups [106], subsidies were especially beneficial to these groups. Only early results are available from research on the ACA’s impact on behavioral treatment disparities. Comparing several years before with the first year after ACA implementation, Creedon and LeCook assessed increases for African Americans, Latinos, Asian Americans, and Whites in mental health and substance abuse treatment associated with onset of the ACA [107]. Respondents who reported serious psychological distress were more likely to be insured and more likely to receive mental health care after ACA implementation, but minority-White disparities remained.

Sexual and Gender Minorities A recent Kaiser Family Foundation study found that since the implementation of the ACA, rates of uninsured decreased significantly among lesbian,

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gay and bisexual individuals, dropping from 19% in 2013 to 10% in 2016 [108]. The ACA and subsequent federal regulations implementing the ACA prohibit discrimination in many aspects of health care. Federal regulations bar discrimination in insurance provision based on sexual orientation and gender identity. Insurance coverage was expanded for sexual and gender minorities through the Supreme Court’s overturning a major portion of the Defense of Marriage Act in United States v. Windsor and subsequent ruling in Obergefell v. Hodges legalizing same-sex marriage nationwide [109]. This greatly expanded spousal coverage by health insurance [109].

Undocumented Immigrants Undocumented immigrants are excluded from Medicaid and, among Latinos who remain uninsured after Medicaid expansion, many are undocumented [105]. Remaining challenges include providing novel health insurance options for coverage of undocumented persons. Thus, several states provide state-funded coverage for undocumented children, for example “Medical-Cal for All Children” (S.B. 75), and California allows undocumented adults to purchase coverage from the state’s health insurance exchange. Medically Underserved Populations and Federally Qualified Health Centers Federal policy and programming have targeted the unfavorable distribution of medical resources by identifying an “Index of Medical Underservice” that identifies “Medically Underserved Areas” (MUAs) and “Medically Underserved Populations” (MUPs) [110]. Healthcare organizations designated as Federally Qualified Health Centers (FQHCs) target these underserved areas and populations. Funded under Section 330 of the Public Health Service Act (PHS), FQHCs are a primary source of health and mental health care for over 25 million people [111].

Ethnic and Racial Minorities and Undocumented Minorities Of those who receive their primary source of health and mental health care in FQHCs, a disproportionate number are ethnic minority persons who come from groups that are poor, and many are migrants, possibly

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including undocumented immigrants [65, 112]. Community Health Centers account for most FQHCs, serving federally designated MUAs and MUPs [110]. Additional FQHC programs target migrant and seasonal agricultural workers and operate as Health Care for the Homeless for Programs and Public Housing Primary Care Programs [112]. In 2015, more than 1375 FQHCs provided health care in about 9750 sites in 50 states, as well as the District of Columbia [102]. “Look-a-like” Centers are federally certified mirror grant-funded FQHCs and receive certain federal preferences, although they do receive federal FQHC grants [113]. FQHCs accept patients regardless of their ability to pay and health status, and they provide preventive and primary care within comprehensive programs of healthcare services, as well as transportation assistance to facilitate receiving care [114]. Between 1998 and 2003, FQHC patients diagnosed with mental health or substance abuse conditions increased fourfold [115] and in 2007, about 77% of FQHCs offered mental health services. The ACA sponsored further growth by providing $11 billion to double FQHC capacity to treat lowincome people with health and mental healthcare needs [65]. Growth in mental health treatment is unknown but growth in patients was especially great for African Americans, Native Americans, and Latinos and in 2014, growth was 11.3% of the Black population, 10.0% of American Indian/ Alaska Native population, and 13.4% of the Latino population vs. 5.5% of the White population [116]. FQHCs are an important source of mental health care for ethnic minority populations, but little is known about mental health treatments and services that are provided and about whether access or quality disparities persist. Early findings do not indicate that access to Behavioral Health Integration grants increased uptake of behavioral health services in FQHCs [117]. FQHCs do have several advantages for disparity reduction. They are primary care-centered to promote screening [112]; they are subject to cultural sensitivity requirements; and they provide transportation assistance. Many FQHCs do not request that immigration status be documented and none turn away patients because they are unable to pay [118]. Reducing these barriers might reduce disparities by encouraging higher rates of minority and immigrant and refugee participation in mental health care. However, only very indirect indicators of success with minority populations are available. Incentives within the ACA encourage integration of mental health care within FQHCs. Clearly, FQHCs should be monitored to determine whether they have had a positive impact in providing mental health care for low-income ethnic and racial minority populations.

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Sexual and Gender Minorities Sexual and gender minority community organizations have provided health and mental health services to sexual and gender minority persons since at least the 1970s [119]. These centers are concentrated within urban hubs and coastal states, and are more likely to be present in areas with a high density of same-sex couples [119]. As acceptance of sexual and gender minority persons increases, the need for specialized services may decrease. Limited English Proficiency (LEP) Programs Many people from ethnic minority backgrounds, including many immigrants and refugees, are among the roughly 25 million who in 2013 did not speak English as their primary language and who have only a limited ability to read, speak, write, or understand English [120]. LEP presents a substantial barrier to mental health treatment, especially specialty mental health care [121]. When suffering from mental disorders, LEP individuals have proven less likely to recognize a need for mental health services, to experience longer durations of untreated disorders, and to use fewer services for the treatment of mental disorders [56]. Legal obligation to assist LEP persons by providing language assistance services originates in Title VI of the Civil Rights Act (1964). The Act stipulates that: “No person in the United States shall, on the ground of race, color, national origin, be excluded from participation, be denied the benefits of, or be subject to discrimination under any program or activity receiving federal funding assistance.” Numerous court rulings establish that exclusion because of LEP is tantamount to the “national origins” exclusion specified in Title VI. Subsequent guidance, especially President Clinton’s Executive Order 13166 and from the Department of Health and Human Services Office of Civil Rights, obligate federally funded programs and services to actively ensure meaningful access to federally funded programs for LEP persons, and supplemental state laws and policies establish reinforcing and supplemental requirements [122]. Statewide responses to federal and state obligations include California’s “Threshold Language Policy,” which exemplifies a widely adopted approach. When a “threshold” of 3000 speakers of any non-English language is reached or 5% of Medical (California’s Medicaid program) enrollees, California’s Threshold Language Policy requires, for speakers of that language: a 24-hour, toll-free phone line with linguistic capability in the threshold language;

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translation of all written materials into the threshold language; bilingual clinicians or other bilingual non-staff, or interpreters or telephonic translation capacity at intake appointments, assessment interviews, treatment sessions, and at other key points of contact. Information to consumers and communities about the availability of these linguistic services is required. Researchers have demonstrated that California’s Threshold Language Policy increased access to care for LEP speakers of several non-English languages [123]. Safety Net Hospitals Especially for impoverished persons and undocumented immigrants with untreated behavioral health problems among whom ethnic minority people are overrepresented, the healthcare safety net is often a last-resort intervention when their symptoms and disability become unmanageable [65, 124]. Many must be treated in hospital emergency departments, especially those located in safety net hospitals where they cannot be turned away [125]. Some move on to inpatient stays [126]. Minorities disproportionately rely on emergency departments for psychiatric care (29/1000 African Americans vs. 23/1000 White) and inpatient care which increases the burden on an already overburdened system. Safety net hospitals face a transformed financial landscape. Many patients who previously were uninsured patients gained coverage under the ACA’s Medicaid expansion. However, also under the ACA, many safety net hospitals receive a declining federal subsidy for providing high volumes of indigent care [127]. Persons who continue to be ineligible for Medicaid in non-Medicaid expansion states, persons denied coverage due to their immigration status, and persons who do not take up Medicaid coverage pose a continuing challenge from uncompensated care [127].

12.4 Conclusions Policies that are directed at increasing access to mental health care for ethnic minority communities are needed. The ACA has increased access to care for some Latino and Asian subgroups. Unfortunately, the failure of many states with large African American populations to expand Medicaid leaves many in this population still uninsured. Similarly, undocumented immigrants largely remain without adequate access to mental health care. Furthermore, our review suggests that insurance alone is unlikely to result in substantial

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decreases in mental healthcare disparities for ethnic minority communities. Rather, comprehensive programs, such as collaborative care within healthcare settings, particularly Federally Qualified Healthcare settings, are needed to decrease disparities. We propose that measures of quality of care for healthcare organizations should include measures of disparities. Disparities should be considered poor quality of care, thus encouraging efforts to decrease inequitable care. Sexual and gender minority populations could benefit greatly from services directed at their special needs [128], including efforts to reduce youth suicidality and out of home placements for these youth. The Los Angeles County Board of Supervisors recently passed a bill to examine and develop appropriate services for sexual and gender minority youth within the County systems of care. Little science is available to guide such efforts. Recently, the NIH included sexual and gender minority populations within their disparities populations and have acknowledged the lack of research addressing their health issues. Further understanding of how to best serve this population is clearly needed. One problem with decreasing disparities is lack of a diverse mental health network. Diverse providers are likely needed to provide outreach to communities and services in the language of many minority patients. Lay health workers are frequently used to deliver evidence-based mental health care in low and middle-income countries. Multiple systematic reviews focused on these settings [129] have found that lay health workers can in fact take part in many aspects of delivery of evidence-based mental health care. They can work to support access to evidence-based care by serving as outreach workers or navigators working within minority communities. They can provide auxiliary care, such as case management or promotion of treatment-related behaviors, such as supporting therapy-prescribed homework. Lay health workers can engage in task-shifting within certain models of care, such as delivering some components of evidence-based care. They can also effectively serve as primary treatment providers of some evidence-based care. Within the United States, they could solve one of the most pressing problems of access to evidence-based care for ethnic minorities, the severe workforce shortage, particularly of minority providers. In this review, we find that discriminatory policies, whether they be regarding right to services for sexual and gender minority persons, legal legitimacy to be in the United States for undocumented individuals, or unjust incarceration for African American and Latino populations, result in higher rates of mental illness. Mental health policy advocates should not only support policies that increase access to quality care for minorities,

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but also support anti-discrimination policies that are likely to have a major impact on the mental health status and mental health care use of ethnic minority populations. Clearly, failure to enact appropriate policy for mental health and mental health care for vulnerable minority populations results in negative outcomes for this population. The high rates of both ethnic minorities and sexual and gender minority persons within institutions such as child welfare and juvenile justice are particularly egregious outcomes of discriminatory policies. Support for policies that preclude discrimination for minority populations are likely to improve mental health outcomes. Policies that decrease discrimination and support fair and equitable care within our institutions could help to improve the mental health of our most vulnerable populations.

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103. Cohen, R. A., Martinez, M. E., & Zammitti, E. P. (2018). Health insurance coverage: Early release of estimates from the National Health Interview Survey, January–March 2018. National Center for Health Statistics. 104. Garfield, R., Damico, A., & Orgera, K. (2018). The coverage gap: Uninsured poor adults in states that do not expand Medicaid. Menlo Park, CA. 105. Zuckerman, S., Waidmann, T. A., & Lawton, E. (2011). Undocumented immigrants, left out of health reform, likely to continue to grow as share of the uninsured. Health Affairs, 30(10), 1997–2004. hlthaff.2011.0604. 106. DeNavas-Walt, C., Proctor, B. D., & Smith, J. C. (2013). Income, poverty, and health insurance coverage in the United States: 2012. In U. S. C. Bureau (Ed.), Current Population Reports, P60-245. Washington, DC: U.S. Government Printing Office. 107. Creedon, T. B., & Lê Cook, B. (2016). Access to mental health care increased but not for substance use, while disparities remain. Health Affairs, 35(6), 1017–1021. 108. Dawson, L., & Kates, J. (2018). The Affordable Care Act and insurance coverage changes by sexual orientation. Retrieved from disparities-policy/issue-brief/the-affordable-care-act-and-insurance-coverage-changes-by-sexual-orientation/. Accessed August 9, 2018. 109. Kates, J., Ranji, U., Beamesderfer, A., Salganicoff, A., & Dawson, L. (2018). Health and access to care and coverage for lesbian, gay, bisexual, and transgender (LGBT) individuals in the U.S. (Issue Brief ). Retrieved from https:// Accessed August 9, 2018. 110. Health Resources & Services Administration. (2018). Medically Underserved Areas/Populations (MUA/P). Data Warehouse. Retrieved from https://¶mFilterId=D. Accessed January 9, 2018. 111. Human Resources & Services Administration. (2016). 2016 Health center data—Program grantee data (Full Report). Retrieved August 9, 2018. 112. National Association of Community Health Centers. (2017). Community Health Center Chartbook. Retrieved from uploads/2017/06/Chartbook2017.pdf. Accessed August 9, 2018. 113. Health Resources & Services Administration. (2018). Health Center Program Look-Alikes. Retrieved from lookalike/index.html. Accessed August 9, 2018. 114. Heisler, E. J. (2017). Federal health centers: An overview (pp. 1–38). Washington: DC. 115. Druss, B. G., Bornemann, T., Fry-Johnson, Y. W., McCombs, H. G., Politzer, R. M., & Rust, G. (2008). Trends in mental health and substance abuse

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services at the nation’s community health centers: 1998–2003. American Journal of Public Health, 98(Suppl. 1), S126–S131. 116. Udow-Phillips, M., Fangmeier, J., & Lawton, E. (2016). The effects of the Affordable Care Act on Federally Qualified Health Centers in Michigan. Ann Arbor, MI. 117. Goldstein, E. V. (2017). Integrating mental and physical health care for low-income Americans: Assessing a federal program’s initial impact on access and cost. Healthcare, 5(3), 32. 118. Wright, D. B., & Ricketts, T. C. (2013). When patients govern: Federal grant funding and uncompensated care at federally qualified health centers. Journal of Health Care for the Poor and Underserved, 24(2), 954–967. https://doi. org/10.1353/hpu.2013.0068. 119. Martos, A. J., Wilson, P. A., & Meyer, I. H. (2017). Lesbian, gay, bisexual, and transgender (LGBT) health services in the United States: Origins, evolution, and contemporary landscape. PLoS One, 12(7), 1–18. https://doi. org/10.1371/journal.pone.0180544. 120. Zong, J., & Batalova, J. (2015). The limited English proficient population in the United States. Retrieved from limited-english-proficient-population-united-states. 121. Sentell, T., Shumway, M., & Snowden, L. (2007). Access to mental health treatment by English language proficiency and race/ethnicity. Journal of General Internal Medicine, 22(2), 289–293. 122. Chen, A. H., Youdelman, M. K., & Brooks, J. (2007). The legal framework for language access in healthcare settings: Title VI and beyond. Journal of General Internal Medicine, 22(2), 362–367. 123. McClellan, S. R., Wu, F. M., & Snowden, L. R. (2012). The impact of threshold language assistance programming on the accessibility of mental health services for persons with limited English proficiency in the Medi-Cal setting. Medical Care, 50(6), 554–558. 124. Wallace, S. P., Torres, J., Sadegh-Nobari, T., Pourat, N., & Brown, E. R. (2012). Undocumented immigrants and health care reform: Final report to The Commonwealth Fund. UCLA Center for Health Policy Research. 125. Committee on the Changing Market, Managed Care, the Future Viability of Safety Net Providers, & Institute of Medicine. (2000). America’s health care safety net: Intact but endangered. Washington, DC: National Academies Press. 126. Bessaha, M. L., Shumway, M., Smith, M. E., Bright, C. L., & Unick, G. J. (2017). Predictors of hospital length and cost of stay in a national sample of adult patients with psychotic disorders. Psychiatric Services, 68(6), 559–565. 127. Coughlin, T. A., Long, S. K., Peters, R., Rudowitz, R., & Garfield, R. (2015). Evolving picture of nine safety-net hospitals: Implications of the ACA and other strategies. Menlo Park, CA: Kaiser Family Foundation.

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128. Network, California Pan-Ethnic Health. (2018). California reducing disparities project: Strategic plan to reduce mental health disparities. CA: Oakland. 129. Mutamba, B. B., van Ginneken, N., Paintain, L. S., Wandiembe, S., & Schellenberg, D. (2013). Roles and effectiveness of lay community health workers in the prevention of mental, neurological and substance use disorders in low and middle income countries: A systematic review. BioMed Central Health Services Research, 13, 412–423. https://doi. org/10.1186/1472-6963-13-412.

Part III Contemporary Issues in Mental Health Policy: Cross Sectors and Populations

13 Mental Health Insurance Parity: How Full Is the Glass? Haiden A. Huskamp

13.1 Framing the Issue The Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008, the federal law requiring parity in coverage for mental health and substance use disorder (MH/SUD) services and medical/surgical services offered in group health insurance plans, was the culmination of over fifty years of advocacy and debate. Advocates had pushed for parity in response to long-standing differences in the generosity of private insurance coverage for MH/SUD vs. medical/surgical services that left many with mental disorders (including SUD) without sufficient financial protection from the costs of treatment. The Affordable Care Act (ACA), which expanded coverage of MH/SUD and other services for millions of Americans, extended parity requirements beyond private group plans. Together these two laws represent the most important expansion of MH/SUD benefits in over fifty years. This chapter will provide a brief history of parity and related policies, and their primary goals. It will then discuss market failures that remain for MH/SUD services.

H. A. Huskamp (*)  Department of Health Care Policy, Harvard Medical School, Boston, MA, USA © The Author(s) 2020 H. H. Goldman, R. G. Frank and J. P. Morrissey (eds.), The Palgrave Handbook of American Mental Health Policy,


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13.1.1 Unequal Limits on MH/SUD Benefits Historically, state and local governments were the primary payers of MH/ SUD services [1]. With the expansion of private health insurance coverage after World War II, more and more Americans gained private insurance benefits for MH/SUD care. However, these benefits were generally more limited than benefits for other types of healthcare services. For example, by 2002, most employer-sponsored plans had annual limits on the number of covered MH/SUD inpatient days and outpatient visits and/or annual MH/SUD spending limits that did not apply to medical/surgical care [2, 3]. Similarly, many plans required higher copayments or coinsurance levels for MH/SUD services than for medical/surgical care [2, 3]. These benefit restrictions were particularly problematic for individuals with more severe mental disorders who were most likely to exceed the limits. The long-standing stigma surrounding mental illness and addiction was an important contributor to coverage differences seen in private plans [4, 5]. Yet, coverage differences were also driven by two key economic forces— moral hazard and adverse selection [6]. Moral hazard refers to the incentive that insured consumers have to use more healthcare services than they would have used if they had to pay the full cost of the services out of pocket. Adverse selection refers to the incentive that insurers have to avoid beneficiaries who are expected to generate claims, such as individuals with a history of mental health service use. Sometimes these forces work together to limit coverage; at other times they work separately. Regarding moral hazard, a large literature using observational data documented a negative relationship between healthcare utilization, including mental healthcare utilization, and the out-of-pocket price enrollees face [7–12]. The RAND Health Insurance Experiment, conducted in the 1970s and early 1980s before the advent of managed care, was a randomized controlled trial that reached the same conclusion, i.e., that the demand for healthcare services increases as the cost sharing required decreases under more generous insurance coverage [13]. The HIE also documented that use of ambulatory mental health services was approximately twice as responsive to the out-of-pocket price faced by consumers as ambulatory general medical care [14]. As a result, a given decrease in the out-of-pocket price resulting from insurance would result in greater inefficiency in mental healthcare use (and thus potentially higher costs for insurers) than in general medical care use overall [6]. Insurers responded to this inefficiency with less generous coverage for MH/SUD care than for general medical care.

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Since managed care became widespread in the 1980s and 1990s, plans no longer need to rely primarily on nominal benefit design to control utilization or temper moral hazard. Managed care allows plans to maintain relatively generous nominal benefits while using supply-side management techniques (for example, utilization review processes, exclusive provider networks) to try to reduce inefficient service use since demand responses for mental health and general medical care become similar in a managed care context. Thus, in a managed care environment, differences in nominal benefit design for MH/SUD relative to other healthcare services may be driven more by attempts to avoid adverse selection on the part of insurers than by attempts to reduce moral hazard. As noted above, adverse selection can occur when one or more plans in a market disproportionately attract individuals with higher expected healthcare costs, creating an incentive for plans to try to avoid enrollment by sicker individuals. Insurers can try to prevent adverse selection by offering less generous benefits needed by groups of enrollees likely to have higher healthcare spending, such as those with mental disorders, relative to competing plans in the market. Plan attempts to evade adverse selection result in inefficient (or in a sense, “wasteful”) competition among plans to avoid enrolling sicker individuals, and inefficiently low levels of MH/SUD coverage in the market.

13.1.2 History of the Parity Movement and Passage of MHPAEA and ACA Efforts to address the disparities in private insurance coverage for MH/SUD relative to other healthcare services date back to President John F. Kennedy’s 1961 directive to the U.S. Civil Service Commission to require plans offered through the Federal Employees Health Benefits (FEHB) Program to cover mental health services on par with general medical services (although FEHB plans were permitted to scale back mental health benefits in the 1970s) [15, 16]. The primary goal of mental health advocates in arguing for parity was to improve financial protection for those with mental disorders, especially those with the most severe illnesses. A parity policy requires that different types of benefits (MH/SUD vs. medical/surgical) within a plan be equal in generosity, with no requirements about the specific level of generosity that must be met. In theory, parity policies could go a long way toward addressing moral hazard and adverse selection as drivers of inefficiencies in the market for behavioral health coverage that result in limited benefits—so long as it was required of all plans in

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an insurance market. In response to a new parity requirement, plans would generally be expected to expand MH/SUD benefits as needed to achieve parity with medical/surgical benefits. As a result, plans would be less able to impose stricter benefit limits of any type as a means of controlling moral hazard for MH/SUD services. By requiring equal coverage, parity would also help to reduce the inefficient competition to avoid higher-cost enrollees through limiting MH/SUD coverage generosity that is driven by plans’ concerns about adverse selection. To address moral hazard and adverse selection related to MH/SUD benefits and to improve financial protection for individuals with mental disorders, advocates could instead have focused on the implementation of benefit mandates that create a floor for MH/SUD coverage that all plans in the market must meet rather than on parity. However, efforts to pass legislation that would expand MH/SUD coverage were grounded in arguments of fairness, that is, that private coverage should not discriminate against one type of illness relative to others by offering more restrictive coverage for services that treat that illness. The fairness argument that formed the foundation for parity legislation was viewed as more compelling to policy makers and the general public than arguments that all plans should cover a specified minimum level of MH/SUD benefits (something viewed as politically “off the table”), so advocates focused their efforts on parity policies. In a statement on the floor of the U.S. Congress, Representative Patrick Kennedy argued for passage of MHPAEA on the grounds that “access to mental health services is one of the most important and most neglected civil rights issues facing the Nation. For too long, persons living with mental disorders have suffered from discriminatory treatment at all levels of society” [17]. With the passage of laws requiring parity in benefits, advocates expected to eliminate unfair coverage limits that plagued individuals with severe illnesses. They also hoped that expanding MH/SUD benefits through parity would increase access to care more broadly. In the 1970s, 1980s, and 1990s, a series of steps toward parity were made, including the passage of parity laws in several states and a federal parity law, the Mental Health Parity Act (MHPA) of 1996 [16]. However, many of these laws were not comprehensive in scope. Many required that parity be implemented for only a subset of MH/SUD diagnoses (for example, the MHPA required parity only in MH but SUD benefits, and some state laws focused on a subset of mental health diagnoses that were deemed to be “biologically based”). Some laws required parity in only certain types of coverage limits. For example, the MHPA required parity only in annual and lifetime

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spending limits, leaving other coverage limits (e.g., higher copayments, outpatient visit limits, inpatient day limits) untouched. While prohibiting annual and lifetime spending limits may have gone a long way toward preventing a financial catastrophe for individuals with severe mental illness, parity advocates continued to push for a more comprehensive law. The Employee Retirement Income Security Act (ERISA), the federal pension law that exempts self-insured employers from state benefit mandates including parity, also greatly restricted the reach of parity requirements at the state level [18]. Buchmueller and Zuvekas found that about half of employees that would have been subject to strong state parity laws during the period 1997–2003 were exempt, mostly due to ERISA [18]. ERISA, along with the Emergency Medical Treatment and Labor Act of 1986 (EMTALA, which requires Medicare-participating hospitals that offer emergency services to provide screening exams and treatment to stabilize all individuals with an emergency condition) did, however, open parity to the reach of federal legislation. Historically the province of state insurance law, these federal laws set a precedent for further federal involvement in health insurance. While advocates pushed for a comprehensive federal parity law, concerns still remained about the potential for moral hazard to result in dramatic utilization increases (and associated premium increases) if federal parity were enacted. These concerns were largely laid to rest after the evaluation of a comprehensive FEHB parity directive implemented in 1999 [19]. Under this directive by President Bill Clinton, the U.S. Office of Personnel Management required all FEHB plans to cover MH/SUD services at parity with general medical care, for services provided within participating plans’ managed care networks. In this way, the FEHB encouraged plans to use managed care techniques to control any potential increases in MH/SUD service use. After implementation of the FEHB parity policy, there was little evidence of improved access to MH/SUD treatment or increased service use [19, 20]. However, out-of-pocket spending dropped, suggesting improved financial protection for individuals with mental disorders. Importantly, when implemented in the context of managed care, parity was not associated with increases in total healthcare spending as many parity opponents had predicted [19, 20]. There was some evidence that resources were preferentially preserved for relatively more severe or chronic illnesses (major depression, bipolar disorder) relative to conditions that are generally less severe (adjustment disorder) [21]. In a pre/post study of the effect of FEHB parity on quality of treatment for major depression among adults, Busch

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and colleagues found modest improvements, although this study was unable to disentangle the effects of parity implementation from secular trends in treatment quality [22]. The evidence that parity could improve financial protection without “breaking the bank” when implemented alongside managed care helped to neutralize the key argument against passage of a comprehensive federal law requiring parity. After the release of these and other findings, estimates from the Congressional Budget Office and others of the average increases in insurance premiums that would result from implementation of full parity dropped from around 4–5% to 1.4% [23]. In 2008, MHPAEA, the most far-reaching parity legislation to date, was passed. Under MHPAEA, group health plans, including employers with more than fifty employees and Medicaid managed care plans, that offer MH/SUD benefits must cover those services at least as generously as they cover other types of healthcare services. MHPAEA does not require coverage of MH/SUD services, however, and plans also maintain discretion in terms of which specific diagnoses to cover. Importantly, in interpreting the definition of treatment limitations in Section 512a of the law, MHPAEA regulations extend parity requirements to all quantitative treatment limits (QTLs, for example, copayments, coinsurance, outpatient visit limits, inpatient day limits, annual or lifetime spending limits) and to non-quantitative treatment limits (NQTLs) that influence service use, including the application of medication necessity criteria, utilization management processes (for example, step therapy), formulary design, and standards for provider network inclusion and payment. In doing so, the regulations recognized that requiring parity only in QTLs would in no way guarantee equal coverage, given the importance of managed care techniques in influencing utilization and spending for MH/SUD services [24]. MHPAEA parity requirements also extend to both in-network and out-of-network benefits. The ACA extended MH/SUD coverage to millions of Americans through expansions of the Medicaid program, subsidies for lower income individuals to pay premiums and cost-sharing for policies offered on new statebased health insurance exchanges, the requirement that private plans cover dependents up to age 26 (referred to as the “dependent coverage provision”), and insurance market reforms such as prohibitions of pre-existing condition exclusions and requirements that prevented plans from charging substantially higher premiums for sicker individuals. The ACA also extends parity requirements to all plans offered on the exchanges and to individuals newly-eligible for Medicaid through the ACA expansions. (The Children’s

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Health Insurance Program Reauthorization Act of 2009 [CHIPRA] also extended MHPAEA parity requirements to CHIP plans.) Importantly, the ACA deemed MH/SUD benefits as one of ten categories of “essential health benefits” that must be included in all plans offered on the exchanges and in plans that serve individuals newly eligible for Medicaid under the ACA expansions. The specific set of MH/SUD services that must be covered by these plans must mirror the coverage of the benchmark plan selected by each state, which must be one of the three largest small group plans, one of the three largest state employee health plan options, one of the three largest federal employee plan options, or the largest commercial HMO plan in the state. The requirement that exchange plans cover MH/ SUD benefits was particularly important given that 34% of individuals and families who bought their own health insurance on the individual market pre-ACA did not have SUD coverage in those policies, and 18% did not have MH coverage [25]. More broadly, to fulfill the ACA’s individual mandate for health insurance coverage and avoid a tax penalty, individuals must enroll in a health plan that meets requirements for coverage of the essential health benefits, including MH/SUD benefits, in their state. The essential health benefits requirement represented the first broad federal mandate of MH/SUD benefits. Together, the MHPAEA and ACA provisions resulted in dramatic improvements in financial access to MH/SUD services.

13.2 Questions There are several important policy questions remaining with respect to insurance parity facing policy makers. They focus on the effects of parity and its implementation in the United States The balance of this chapter focuses on the following questions and presents evidence available to address these questions.

13.2.1 What Have Been the Effects of Federal Parity Under MHPAEA and ACA? While there is an extensive literature on the effects of state parity laws and the FEHB parity directive, the MHPAEA and ACA parity policies (as well as other ACA provisions that expanded MH/SUD coverage) are more comprehensive and far-reaching. Policy makers need to understand the impact

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of these laws on financial protections in terms of out-of-pocket costs and on access and quality of care for individuals with mental disorders.

13.2.2 What Do We Know About Populations not Covered by These Laws? While MHPAEA and ACA resulted in the broadest expansions in MH/ SUD coverage in at least fifty years, key provisions of these laws did not apply to everyone. It is important to understand which populations are not included in the expansions and what access and quality of care look like for these populations.

13.2.3 What Will Be the Consequences for Parity if Portions of ACA Are Repealed and Only MHPAEA Remains in Force? This is a particular concern because the MHPAEA does not provide for a mandate for MH/SUD coverage in the way that the ACA does include behavioral health care as an essential benefit. A number of potential legislative or regulatory changes that would alter or remove certain provisions of ACA have been introduced recently; if implemented, these could erode the expansions made under MHPAEA and ACA. What special concerns remain for the implementation of parity with respect to NQTLs as well as quantitative limits? Monitoring and enforcement of compliance with MHPAEA in terms of QTLs and NQTLs present a number of challenges for regulators. The extent to which federal parity improves financial protection for individuals with mental disorders depends on the extent to which parity is implemented and enforced for both types of coverage limitations.

13.3 Evidence 13.3.1 Effects of Federal Parity Under MHPAEA and ACA Recent research on the effects of federal parity can be classified into three categories: one, the effects of MHPAEA on MH/SUD coverage (that is, did plans comply with parity requirements?); two, the effects of MHPAEA on

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access to care, financial protection for individuals with mental disorders, and quality of care received; and three, the effects of the ACA on coverage and service use for individuals with mental disorders. MHPAEA’s Effects on MH/SUD Coverage In spite of concerns that some employers might drop behavioral health benefits rather than implement parity after MHPAEA implementation, few plans did so [26]. By 2011, when enforcement of MHPAEA began, most large private plans had eliminated QTLs for MH/SUD services that did not meet parity requirements [26–29]. However, a minority of plans (both large employer plans and plans offered on the health insurance exchanges) continued to offer benefits that appeared inconsistent with parity requirements in one or more ways after the law’s implementation [27, 30]. The lack of accessible information on how NQTLs are applied to MH/ SUD benefits across plans makes analysis of compliance with NQTL parity requirements challenging, and data on rates of compliance with parity for NQTLs are limited. The lack of data at this point is not surprising given that NQTLs are extremely difficult to observe, and the fact that this is the first comprehensive effort to regulate management of care. In spite of these challenges, some information on NQTL compliance is available. For example, the Department of Labor, through its investigation of potential MHPAEA violations, reported that 58% of these violations over the period 2010–2015 were related to impermissable NQTLs [31]. One study of plan information posted on health insurance exchange websites in two states documented apparent inconsistencies with MHPAEA rules for prior authorization requirements for a subset of plans [30]. Although researchers could not observe the ultimate coverage approval rates for the prior authorization reviews for these plans or how medical management protocols were applied to covered benefits more broadly, the differential listing of prior authorization requirements for MH/SUD vs. medical/ surgical benefits raises concerns about the potential for adverse selection that could result given that individuals use the information on these plan websites in selecting their plans. Those with chronic mental disorders may be less likely to select a plan with prior authorization requirements for MH/ SUD services. In a 2013–2014 survey of state insurance departments, Smith and colleagues found that 47 states (including the District of Columbia) allowed exchange plans to use utilization controls on SUD services, and 37

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of those states allowed plans full discretion over these controls with no specifications or guidance provided [32]. MHPAEA’s Effects on Access, Financial Protection, and Quality of Care In terms of MHPAEA’s effects on access to care and financial protection for individuals with mental illness, most studies have found little or no overall effect on MH/SUD service use and a decrease in out-of-pocket spending, suggesting improved financial protection associated with MHPAEA implementation [33–36]. Several studies have documented MHPAEA’s effects on selected subpopulations, which differ in some cases from the overall effects. For example, for individuals with eating disorders and children with autism spectrum disorder, two diagnoses that some plans have excluded from coverage [26], MHPAEA implementation was associated with increased service use but no increase in out-of-pocket spending, again suggesting improved financial protection after parity [37, 38]. For adults with SUD diagnoses, Friedman and colleagues found modest increases in inpatient and outpatient MH/SUD service use and out-of-pocket MH/SUD spending associated with MHPAEA implementation [39]. In a study of MHPAEA’s effects on children, Kennedy-Hendricks and colleagues found a small increase in inpatient mental health days and decreased out-of-pocket mental health spending overall and among children with the highest mental health expenditures (top 15%) after parity implementation [36]. However, estimated reductions in out-of-pocket expenditures among children with the highest mental health spending were likely too modest to have substantially reduced the financial burden on the families of these children [36]. In a pre/post study of mental health service use among children, Walter, Yuan, and Cabral found increased mental health outpatient service use after MHPAEA’s implementation. After MHPAEA, out-of-pocket spending for outpatient mental health services delivered by physicians was lower than pre-MHPAEA, while out-of-pocket spending for outpatient mental health services delivered by non-physician behavioral health professionals was higher [40]. However, the pre/post design of this study does not allow one to disentangle MHPAEA’s effects from secular trends. MHPAEA’s application of parity to out-of-network benefits was a unique feature of the law relative to previous parity policies. In a study of MHPAEA’s impact on SUD out-of-network service use, McGinty and

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colleagues found increased SUD out-of-network use and spending after parity, but no effect on out-of-pocket spending for SUD out-of-network services [41]. To date, no studies have assessed MHPAEA’s impact on the quality of MH/SUD services received. It is also important to note that studies examining federal parity’s impact have focused on privately insured individuals; little is known about parity’s impacts on Medicaid and CHIP enrollees. ACA’s Effects on Coverage Rates and Service Use for Those with Mental Disorders After ACA implementation in 2014, uninsurance rates declined for individuals with mental disorders [42–45]. There were also decreases in reports of unmet need for mental health care due to cost [44]. While mental health service use among individuals with mental illness increased in the first year after ACA implementation, the increase did not persist through the second year after implementation [42, 46]. SUD treatment use, both overall and among those with recent criminal justice system involvement, was not affected in the first two years of ACA implementation [42, 43, 46, 47]. One study documented increases in SUD treatment and a lower likelihood of reporting financial barriers as a reason for not receiving services among individuals diagnosed with opioid use disorder during the same period [48]. After the implementation of the ACA’s dependent coverage provision, rates of uninsurance dropped 8.9 percentage points among young adults age 19–25 with mental illness relative to adults age 26–34 with mental illness [49]. Several studies have documented increases in mental health treatment among young adults after implementation of the ACA’s dependent coverage provision [49–51]. One study by Saloner and colleagues found a decrease in admissions to specialty SUD treatment for 21–24 year olds relative to 30–34 year olds after the dependent coverage provision was implemented [45]. Additional study is needed to fully understand the longer term implications of key ACA provisions on financial access to care and service use among those with mental disorders.

13.3.2 Remaining Concerns After Parity Despite MHPAEA’s success at improving financial protection for individuals with behavioral health conditions and the tremendous expansion

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in behavioral health benefits that resulted from the implementation of MHPAEA and ACA, equal coverage of MH/SUD and medical/surgical services has not been fully achieved for several reasons. First, as noted above, certain populations are not covered by the parity requirements of these laws. For example, a key omission is Medicaid beneficiaries in fee-for-service programs [6]. While most states have moved the majority of their Medicaid enrollees into managed care plans, many states still have a minority of enrollees in fee-for-service programs, and these programs are not subject to parity requirements. Those not affected by parity requirements also include the approximately 28 million non-elderly adults who were uninsured at the end of 2016 [52]. Second, MHPAEA does not require plans to include MH/SUD benefits and allows plans to specify which diagnoses will be covered if benefits are offered. The ACA essential health benefits requirement helps to ensure that most insured individuals have MH/SUD benefits despite the lack of a mandate in MHPAEA. Nevertheless, Smith and colleagues found that about one in five states did not require qualified health plans offered on the state health insurance exchange to offer any particular SUD services or medications when surveyed during the period 2013–2014 [32]. Another 25% covered fewer than four SUD services (primarily a combination of outpatient treatments and detox). Only 22% required that these plans cover any medications used to treat opioid use disorder. If the essential benefits requirements were dropped or weakened through ACA repeal or regulatory changes, more plans might elect to drop MH/SUD benefits or to narrow the list of covered diagnoses in the future. Such a change could have a dramatic impact on MH/SUD coverage in the United States. Third, the regulations that guide implementation of MHPAEA do not require full parity in QTLs for all services. The regulations create six benefit classifications for comparison of MH/SUD and medical/surgical benefits: inpatient in-network, inpatient out-of-network, outpatient in-network, outpatient out-of-network, prescription drugs, and emergency care. Within each classification, QTLs for MH/SUD services can be no more restrictive than the “predominant” (i.e., that used by half or more medical/surgical benefits in the classification of interest) requirement or limitation that applies to “substantially all” (two-thirds or more) medical/surgical benefits in the same classification [53]. The “predominant”/“substantially all” rules in the regulations, intended to provide plans with some flexibility in the implementation of the requirements, can leave room for benefit limits driven by moral hazard or selection-related behaviors. For example, if a plan wished to avoid individuals with opioid use disorder, the plan could limit prescription

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fills for one or more medications commonly used to treat this condition as long as the predominantly/substantially all rules were met. Fourth, and perhaps most vexing, plans may impose an NQTL for MH/ SUD benefits only if “any processes, strategies, evidentiary standards, or other factors used in applying the NQTL … are comparable to, and applied no more stringently than, the processes, strategies, evidentiary standards, or other factors used in applying the limitation with respect to medical/ surgical benefits in the same classification …” [53]. Thus, the regulations require that parity in NQTLs be achieved in the process, but not necessarily in the outcome. For example, a plan could have a lower rate of approvals for prior authorization requests for mental health services than for general medical services if the plan could show the processes and standards guiding the approval determination were the same for both types of care. Requiring differences in outcomes would not generally make sense (e.g., good clinical care might lead to differences in length of stay or number of covered outpatient services across different types of illnesses). The challenge of requiring parity in process, however, lies in the difficulty of observing the processes, strategies, and standards used in applying these limitations. For example, consider the difficulties of ensuring that standards for provider participation in plan networks, including reimbursement rates, are at parity for MH/ SUD and medical/surgical providers. Recent studies of provider networks for plans offered on the health insurance exchanges have found that provider networks for mental health services are narrower than those for primary care and for many other specialties [54, 55]. However, narrower networks could be reflection of differences in provider supply rather than a per se violation of parity. Thus, evidence of narrower networks of MH/SUD providers would not, in itself, be a violation of MHPAEA requirements; rather, one must prove that the standards and processes for network participation used and/or the standards and processes used for the determination of reimbursement rates for MH/SUD providers were different than those used for medical/surgical providers, which is a much more challenging task for consumers and regulators. Similarly, regarding formulary design, documenting that a plan formulary requires prior authorization for coverage of more MH/SUD drugs than medical/surgical drugs would not be considered a violation of parity; instead, one would need to prove that the standards, processes, and evidentiary standards underlying the application of prior authorization rules by the plan were more restrictive for MH/SUD medications than for medical/surgical drugs. To aid consumers in assessing plan compliance with parity requirements, MHPAEA regulations require that plans disclose reasons for denials

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of coverage for MH/SUD services and standards used for determination of medical necessity. However, this still places a considerable burden on the enrollee to interpret this information and attempt to seek redress. Ironically, while use of managed care techniques in combination with parity benefit expansions made the passage of a comprehensive federal parity law possible (since total expenditures do not generally increase when parity benefits are implemented in the context of managed care), managed care makes it extremely difficult to ensure parity compliance [56]. Plans now have a broad array of management tools available for use in their efforts to discourage higher-cost individuals from enrolling in their plans, and the use of these tools is much more challenging to observe and regulate. In fact, McGuire has argued that direct regulation of NQTLs will likely be inadequate to ensure parity in coverage given the difficulties of observing the application of management techniques by plans [56]. Instead, McGuire suggests that changing the underlying incentives for plans to engage in selection behaviors, either by redesigning payment incentives to encourage desired plan behaviors (e.g., the creation of adequate MH/SUD provider networks) or restructuring competition among plans (e.g., having plans compete to be among a limited set of choices offered to employees, allowing the plan greater leverage over plans and greater ease in monitoring plan performance over time) may be necessary to ensure parity in NQTLs in practice [56].

13.4 Conclusions Mental health advocates fought for decades to achieve equal coverage for MH/SUD services and to improve financial protection for individuals with mental disorders through the passage of comprehensive parity laws. MHPAEA, in combination with relevant provisions in the ACA, was the culmination of their efforts, extending broad parity protections to most insured Americans and expanding access to behavioral health benefits to many who lacked MH/SUD coverage. While the parity provisions of these laws improved financial protection for millions with mental disorders, parity has not been a “cure-all” for the mental health system as some had hoped, nor should it have been expected to be. Advocates and policy makers pursued parity (as opposed to alternative policies such as a general benefit mandate that would guarantee a floor of MH/SUD coverage across all plans) as a means of addressing inefficiencies in the market for behavioral health coverage at least in part for reasons of political expediency. By framing the issue as one of discrimination and lack

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of fairness, policymakers were able to garner the political support needed to obtain passage of MHPAEA and to extend parity requirements to additional populations under the ACA (at least after there was evidence that parity implemented in the context of managed care would not result in large MH/SUD spending increases). However, the focus on fairness in framing the political debate came with a price. Pegging the generosity of MH/SUD coverage to that of medical/surgical coverage through parity requirements does not guarantee generous MH/SUD benefits for everyone but instead only requires a plan to cover MH/SUD services (if it chooses to offer such benefits) at least as generously as it covers medical/surgical care. In addition, the difficulties of monitoring and enforcing parity in NQTLs makes ensuring true equality of coverage extremely challenging, if not impossible. Thus, while most would view the changes in financial access to MH/ SUD services resulting from MHPAEA/ACA as being a glass that is quite full in terms of the expansions in MH/SUD coverage and the improvements in financial protections achieved, the glass is still partially empty in that all outcomes that advocates had hoped for, including increased MH/SUD service use and full equality in coverage, have not yet been achieved even after implementation of such a comprehensive parity policy as MHPAEA. In the end, parity requirements are a form of insurance regulation, and thus must fit within the framework of broader laws that regulate the insurance market. As a result, parity efforts are limited in what they can accomplish in terms of ensuring adequate financial protection and access to high-quality care for all individuals with mental disorders. To continue to narrow the treatment gap for mental disorders and improve access to care, there is more work to do to ensure adequate financial protection for individuals with mental disorders and to address the many other barriers to care besides insurance coverage. Additional research is needed to understand parity’s effects outside of private group insurance (that is, Medicaid, insurance exchanges, CHIP) and its effects on quality of care. In addition, we need to better understand how plans are (or are not) complying with NQTL requirements. Even though MHPAEA regulations require that plans disclose to consumers information about how medical necessity criteria are applied in their individual case and reasons for any claim denials, aggregate data on the standards and strategies used in applying NQTLs to enrollee coverage decisions are not available. Greater transparency would assist consumers, regulators, and researchers in understanding how managed care strategies that underlie NQTLs affect coverage and financial protection for individuals with mental disorders post-MHPAEA. In addition, changes in payment incentives and the structure of competition among plans must be explored to determine their

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potential impact in improving access to care for this population. Finally, it is important to better understand how key provisions of the ACA, including the requirement that plans include MH/SUD benefits as essential health benefits, have been implemented and the role these provisions play in ensuring financial protection for this population. Without these provisions to support the reach of the parity requirements, the gains achieved in MH/ SUD coverage over the past decade may be at risk.

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