Beyond Beds The Vital Role of a Full Continuum of Psychiatric Care October 2017 Beyond Beds: The Vital Role of a Full Continuum of Psychiatric Care Debra A. Pinals, MD Medical Director, Behavioral Health and Forensic Programs Michigan Department of Health and Human Services Clinical Professor of Psychiatry Director, Program in Psychiatry, Law and Ethics University of Michigan Doris A. Fuller, MFA Chief of Research and Public Affairs Treatment Advocacy Center This work was supported by the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration of the U.S. Department of Health and Human Services. This National Association of State Mental Health Program Directors report is joint-released by the Treatment Advocacy Center NASMHPD.org/content/tac-assessment-papers TreatmentAdvocacyCenter.org/beyond-beds EXECUTIVE SUMMARY Nearly 10 million individuals in the United States are estimated to live with a diagnosable psychiatric condition sufficiently serious to impair their personal, social, and economic func- tioning. Hardly a day goes by without a study, headline, court case, or legislative action call- ing for reforming the mental health system to better serve this population. Often, these calls to action end in two words: “More beds.” Largely missing from the outcry are answers to broader questions such as these: u What do we mean by “beds”? More precisely, what types of beds are needed: acute, transitional, rehabilitative, long-term or other? u Are there differences in the needs of different age groups – youth, adults, older per- sons – and diagnoses that need to be reflected in the bed composition? u What are the evidence-based outpatient practices that would reduce bed demand by reducing the likelihood that a crisis will develop or by diverting individuals in crisis to appropriate settings outside of hospitals? Beyond Beds: The Vital Role of a Full Continuum of Psychiatric Care addresses these ques- tions and offers 10 public policy recommendations for reducing the human and economic costs associated with severe mental illness by building and invigorating a robust, intercon- nected, evidence-based system of care that goes beyond beds. Each recommendation is drawn from data and observation and is illustrated by the story of the ficitional Taylor, a representative young adult whose journey toward mental health recovery illustrates both the failings and the potential of the current continuum of psychiatric care. Beyond Beds also launches a year of National Association of State Mental Health Program Directors (NASMHPD) publications reporting on aspects of psychiatric care that together can enhance the capabilities of a robust continuum. These include a review of comprehensive U.S. inpatient capacity, forensic bed capacity and number of beds; health integration and co-occurring substance use disorders; populations with intellectual and developmental dis- orders and other special needs; crisis intervention; homelessness; trauma-informed care; peer services; and health disparities and cultural competence. Each assessment is grounded in the premise that people with serious mental illness need and deserve access to the same levels of care that individuals with other medical conditions already commonly experience and that obstacles to such treatment need to be removed. To lay the foundation for the detailed stakeholder recommendations that conclude each of these papers, policymakers at every level should take the following steps: Recommendations Recommendation #1: The Vital Continuum Prioritize and fund the development of a comprehensive continuum of mental health care that incorporates a full spectrum of integrated, complementary services known to improve outcomes for individuals of all ages with serious mental illness. Recommendation #2: Terminology Direct relevant agencies to conduct a national initiative to standardize terminology for all levels of clinical care for mental illness, including inpatient and outpatient treatment in acute, transitional, rehabilitative, and long-term settings operated by both the public and private sectors. BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE n 1 Recommendation #3: Criminal and Juvenile Justice Diversion Fund and foster evidence-based programs to divert adults with serious mental illness and youth with serious mental illness or emotional disorders from justice settings to the treatment system. These programs should operate at all intercept points across the sequential intercept framework and be required to function in collaboration with correctional and other systems. Recommendation #4: Emergency Treatment Practices Monitor hospitals for adherence to the Emergency Medical Treatment and Labor Act in their emergency departments and levy sanctions for its violation, including the withholding of public funding. Hospitals with licensed psychiatric beds that refuse referred patients should similarly be sanctioned if monitoring shows they have a record of refusing referred patients without legitimate cause. Recommendation #5: Psychiatric Beds Identify those policies and practices that operate as disincentives to providing acute inpatient and other beds or that act as obstacles to psychiatric patients’ accessing existing beds (e.g., the institutions of mental disease exclusion) and require hospitals benefiting from taxpayer dollar investments to directly provide or ensure timely access to inpatient psychiatric beds. Recommendation #6: Data-Driven Solutions Prioritize and fully fund the collection and timely publication of all relevant data on the role and intersystem impacts of severe mental illness and best practices. Recommendation #7: Linkages Recognize that the mental health, community, justice, and public service systems are inter- connected, and adopt and refine policies to identify and close gaps between them. Practices should include providing “warm hand-offs” and other necessary supports to help individuals navigate between the systems in which they are engaged. Recommendation #8: Technology Create and expand programs that incentivize and reward the use of technology to advance care delivery, promote appropriate information sharing, and maximize continuity of care. Policymakers should require as a condition of such incentives that outcome data be utilized to help identify the most effective technologies, and they should actively incorporate proven technologies and computer modeling in public policy and practice. Recommendation #9: Workforce Initiate assessments to identify, establish, and implement public policies and public-private partnerships that will reduce structural obstacles to people’s entering or staying in the men- tal health workforce, including peer support for adults and parent partners for youth and their families. These assessments should include but not be limited to educational and train- ing opportunities, pay disparities, and workplace safety issues. The assessments should be conducted for the workforce across all positions. Recommendation #10: Partnerships Recognize the vital role families and non-traditional partners outside the mental health sys- tem can play in improving mental health outcomes and encourage and support the inclusion of a broader range of invited stakeholders around mental illness policy and practice. 2 n BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE BACkgRoUnd That access to psychiatric beds is a topic of national urgency is an understatement. Emergency physicians regularly issue grim reports on the boarding of psychiatric patients in emergency departments (EDs), and states are being sued—sometimes repeatedly—over bed waits. In the academic literature and mass media, psychiatric bed shortages are often blamed for homelessness, mass incarceration, mass violence, and a host of other individual and societal consequences. At times, it can appear there is no poor outcome or social system failure that cannot be attributed to the number of psychiatric beds in general, the number of state hospital beds in particular, and the trend known as deinstitutionalization. The National Association of State Mental Health Program Directors (NASMHPD) is a member- ship organization of the state executives responsible for the nation’s public mental health delivery system, including state hospitals. In the current environment, NASMHPD is fre- quently asked questions like these: u How many psychiatric beds exist in the United States, where are they, who operates them, and who do they serve? u How many psychiatric beds does the nation need, of what kind and where? u What is the quality of care in these inpatient settings, and what are the outcomes they produce for patients, staff, and the public? u Why do states continue eliminating psychiatric beds (or why are they not creating more) if these beds are in short supply? u To what degree can homelessness; mass incarceration; violence—including suicide and homicide—substance use disorder prevalence; and a host of other clinical, social, and public health issues be attributed to the number of psychiatric beds available? Authoritative answers have been hard to come by. No government agency publishes a com- prehensive national census that includes all categories of available mental health beds— child/adolescent, adult and geriatric, forensic, public and private, crisis and rehabilitation, mental health and substance use, and all the others that serve patients with behavioral health conditions (see Figure 1). No evidence-based target number exists for how many psychiatric beds WHY BEYOND BEDS? are needed at each level of care, either in the United The Vital Continuum States or elsewhere. Causality between deinstitution- Timely and appropriate supports are the alization and social trends that developed in the same first line of mental health care. When fully time frame (e.g., increased incarceration and home- realized, they reduce the demand for the lessness) is complicated by so many confounding fac- inpatient beds which provide essential tors that it is never beyond debate. At the same time, backup when psychiatric needs cannot be a consensus definition of “psychiatric bed” that would met in the community. make answering any of these questions easier does not exist. RECOMMENDATION: Policymakers should prioritize and fund development As crucial as these questions and their answers are, of a comprehensive continuum of mental what is too often lost in the clamor surrounding them health care that incorporates a full spectrum is the reality that 24/7 inpatient care represents only of integrated, complementary services a single component of a well-functioning continuum known to improve outcomes for individuals of care for any life-threatening health condition. We of all ages with serious mental illness. readily acknowledge that patients with cancer, stroke, congestive heart failure, and an endless number of BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE n 3 other medical conditions may require hospitalization at some point, but we do not expect hospitals to provide all the care required for those patients to survive and recover. Indeed, the U.S. health care system generally has moved to a model that prioritizes the swiftest possible return to the medical patient’s natural environment. From 2005 to 2014, the total number of hospital stays for all causes fell by 6.6%; for mental health/substance use conditions, hospital admissions rose by 12.2% in the United States—the only category of hospitalization that increased in the time period.1 Figure 1: Estimated U.S. Psychiatric Bed Availability U.S. Psychiatric Beds by the Numbers 1955 558,922 – inpatient psychiatric beds in state hospitals (peak year; 337 beds per 100,000 population) 2014 37,209 – inpatient psychiatric beds in state and county hospitals (11.7 beds per 100,000 population, of which 17,046 or 5.4 beds per 100,000 population are occupied by forensic patients) 30,864 – inpatient psychiatric beds in general hospitals with separate psychiatric units (9.7 beds per 100,000 population) 24,804 – inpatient psychiatric beds in private psychiatric hospitals (7.8 beds per 100,000 population) 8,006 – inpatient psychiatric patients in medical/surgical “scatter” beds (2.5 beds per 100,000 population) 3,124 – inpatient psychiatric beds in Veterans Affairs hospitals (1.0 beds per 100,000 population) 3,499 – inpatient beds in other specialty mental health centers (1.1 beds per 100,000 population) TOTAL 101,351 – inpatient psychiatric beds (29.7 beds per 100,000 population) U.S. Residential Care Beds by the Numbers 2014 41,079 – residential treatment beds in residential treatment centers (12.9 beds per 100,000 population) 183,534 – inpatients in nursing homes with diagnosis of schizophrenia or bipolar disorder (57.8 beds per 100,000 population) 2017 Bed numbers not reported by public agencies Child/adolescent beds, total public and private Geriatric beds, total public and private Acute-care mental health beds, total public and private Residential treatment beds specialized in transitional services, public and/or private Residential treatment beds specialized in rehabilitation services, public and/or private Residential treatment beds specialized in long-term services, excluding nursing homes Group-living beds, total public and private Supported housing beds, total public and private Psychiatric emergency room beds Source: Substance Abuse and Mental Health Services Administration. (2014). 2014 national mental health services survey, Tables 2.3 and 2.3. Retrieved from https://wwwdasis.samhsa.gov/dasis2/nmhss/2014_nmhss_q.pdf 4 n BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE Prior to the late 20th century, the psychiatric hospitals operated by the individual states essentially were the U.S. mental health system. In 2014, NASMHPD issued The Vital Role of State Psychiatric Hospitals to examine and affirm the continuing place of state psychiatric hospitals in the continuum of recovery services for this population. However, the era of state mental health authorities’ holding the keys to the system is over. Today, private providers, public agencies serving specific subpopulations, managed care organizations and other insurers, courts and other justice stakeholders, corrections systems, community partners such as faith-based organizations, policymakers and budgeters at every government level, special interest advocacy groups, and of course, the individuals living with serious mental illness themselves influence, fund, oversee, provide, or participate in mental health service delivery and recovery. The opportunities and options for improving mental health care have perhaps never been greater. The Mental Health Parity and Addiction Equity Act, the Comprehensive Addiction and Recovery Act, the 21st Century Cures Act, and other federal and state initiatives have been enacted largely in response to growing recognition by the public and policymakers that inefficient and ineffective care delivery is costly, and that discriminatory practices produce poor outcomes for a large and vulnerable population. Nonetheless, consensus on priorities, strategies, and steps to achieve this end has proven elusive. In this debate, few subjects have been as fraught as the issue of psychiatric beds. In Search of a Definition Despite cries for more of them, the term “psychiatric bed” has no commonly recognized definition. In the most basic sense, a bed is a place where an individual can sleep at night, but that definition relates more to housing than to treatment. After all, jails report bed numbers, too. In the behavioral health world, beds were once TERMINOLOGY defined principally by their location inside state hospitals. The term “psychiatric bed” continues Shared terminology for core components of to be used interchangeably with “state hospital mental health care is essential to discussing, bed,” and also generically, as if all beds serve defining, and establishing an evidence-based the same purpose. Yet, most mental health beds continuum. Standardized definitions in American in the United States today are located outside Society of Addiction Medicine (ASAM) level- state hospitals, and they serve a variety of pur- of-care guidelines for substance use and the poses for distinct subpopulations, critical distinc- Level of Care Utilization System (LOCUS) for tions that are often lost in the larger beds nar- psychiatric and addiction services are examples rative. Beds that provide the around-the-clock that model the benefits to clinicians, patients, psychiatric nursing and psychiatric care once and researchers of using a common language. found only in state hospitals now also exist in RECOMMENDATION: Policymakers should university and community hospitals, charity and direct relevant agencies to conduct a national for-profit hospitals, private facilities dedicated initiative to standardize terminology for all entirely to mental health care, and other con- levels of clinical care for mental illness, including figurations. Patients such as older persons with inpatient and outpatient treatment in acute, dementia who once were housed almost exclu- transitional, rehabilitative, and long-term settings sively in state hospitals now are accommodated operated by both the public and private sectors. in a variety of community settings. Persons with substance use challenges are often treated in BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE n 5 facilities to address their specific needs. To further complicate matters, treatment services and a place to sleep are often delivered in the same setting, such as nursing homes and supported housing, a dual purpose that is often missed in the beds conversation. Similar overlaps are seen in the child/adolescent behavioral health and welfare systems. Beds where psychiatric care is delivered also exist outside hospital psychiatric units altogether: u Crisis stabilization beds for a level of care short of hospitalization, generally for very brief lengths of stay (several hours to a few days) u Transitional or respite beds in residential or other settings for 24-hour non-medical monitoring and significant supports, typically for a fixed or limited period following hospitalization u Long-term beds in group living environments or adult foster care settings, board-and- care facilities, nursing homes and a variety of other placements for individuals with chronic mental illness who are not ready or able to reenter the community u Jail or prison hospital beds operated by correctional systems for incarcerated individu- als with mental illness, along with placements for youth in the delinquency system u “Scatter beds” where psychiatric patients are treated in hospital medical-surgical and pediatric units2 These bed descriptions recognize functional differences and durations of stay, but funding also differentiates and complicates the examination of psychiatric beds. When virtually all psychiatric beds were in state hospitals, they were often called “public” beds because they were funded by state budgets. In today’s world of managed care contracts and expanded Medicaid coverage, where psychiatric care in private settings may be provided through public insurance, the phrase “public bed” is antiquated, and even the notion of “publicly funded” can be problematic. When a child/adolescent or adult bed in the psychiatric unit of a for-profit private, hospital is occupied by a patient whose treatment is publicly insured by Medicaid or Medicare, is that a private or public bed? The lack of a shared language for discussing psychiatric beds and the historical scarcity of comprehensive data about them has immeasurably complicated and obscured our understanding of the beds, their numbers, and their role in the continuum of psychiatric care. Beyond terminology, philosophical differences also bedevil the beds conversation. More than 50 years after deinstitutionalization began, bed critics continue to fear that bed expansion on any scale could precipitate a return to the 19th-century model of institutional care that peaked in 1955. At the same time, after 50 years of watching state hospital bed numbers inexorably shrink, bed proponents fear that beds will continue to be closed until none are left. It is time to retire the extremes of both viewpoints. Three generations of pharmacologi- cal treatment development3 and federal laws and programs such as the Social Security Dis- ability Insurance program, the Americans with Disabilities Act, the Children’s Health Insur- ance Program (CHIP) and its 2009 reauthorization, the Individuals with Disabilities Education Act (IDEA), and others now ensure that individuals with chronic conditions and disabilities, regardless of income, will be integrated into society and entitled to lives of inclusion. 6 n BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE At the same time, a recognition that hospital beds continue to play a vital role in providing acute and chronic care for a segment of the population with serious mental illness at times of need is widespread. This recognition has prompted some states and providers to reexamine bed numbers, and generated unprecedented support for repealing federal limits on Medicaid reimbursement to adult psychiatric facilities of more than 16 beds. Halting bed closures has been another approach.4 With the extremes laid to rest, we will be better prepared to discuss the full continuum of psychiatric care in all its aspects. STATE HOSPITAL BEDS AT THEIR PEAK… It is 1955. There are nearly 560,000 state hospital beds in the United States – 337 for every 100,000 men, women, and children. The beds are occupied by patients with a wide variety of medical, neurological, and psychiatric conditions, including epilepsy, neurosyphilis, developmental and intellectual disabilities, schizophrenia, depression, and geriatric dementia, among others. Monuments to a 19th-century period of social reform and a century of construction, many are sprawling clusters of buildings – the urban ones set in vast manicured lawns, the rural ones operated as self-sustaining communities with their own farms and factories. In heavily populated areas like Southern California, it is nearly impossible to cross a county line without coming across a state hospital complex. Some patients stay briefly, while stabilizing from a mental health crisis; others enter in their youth and grow old on the state hospital grounds. While the pendulum has continually swung between permissive and restrictive admission criteria, access has generally tilted toward allowing families to admit their young and adult children, spouses, and elderly parents to state institutions with little legal scrutiny, process, or question. Individuals may self-admit as well. Patients are also committed by the courts because they meet civil commitment criteria that are typically broad and focused on a need for treatment, or because of simultaneous criminal justice involvement, a circumstance that ultimately becomes known as forensic or criminal justice involvement. The quality and condition of the facilities and the treatment they provide is as varied as the patient population itself, some infamously decrepit and abusive, others therapeutic. Outside the hospitals, relatively few community centers have emerged to replicate, supplement or sustain the functions of the state hospitals. All of this is about to change. BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE n 7 How wE goT HERE The period of state hospital downsizing and closure that has come to be known as deinsti- tutionalization began in the United States in the 1950s and, with a few exceptions, eventu- ally became a worldwide phenomenon.5,6 Although federal legislation in the 1960s vastly accelerated the trend, deinstitutionalization grew from a confluence of political, social, legal, ideological, clinical, economic, and other forces that began to emerge two decades earlier.7 By the 1940s, physical deterioration of many state hospitals nearing the century mark and deplorable conditions inside them were prompting media exposés and congressional hear- ings. Returning World War II veterans with psychiatric injuries expected to receive care in their home communities, not in institutions.8 In 1953, the discovery of the antipsychotic effects of chlorpromazine (trade name Thorazine) made it possible to sufficiently resolve symptoms that individuals with psychotic disorders could, for the first time, live safely and stably in the community. On their own, a few states had begun recognizing the benefits of moving toward a decentralized, community-based model of care and opened community mental health centers. Already by 1955, state hospital bed numbers had peaked. Fuel for the nascent shift came in the 1960s from the federal government. The Commu- nity Mental Health Centers Construction Act (CMHCA) of 1963 established community-based treatment as the national standard of care for people with mental illness and intellectual disabilities by authorizing construction of a national system of community mental health cen- ters. Two years later, in 1965, the Social Security Disability Insurance program established Medicaid insurance for low-income individuals and those with mental health disabilities. By the early 1970s, lawsuits were restricting civil commitment. The ethos of society at the same time was shifting toward recognition of individual empowerment and autonomy. Due to these and the earlier developments, the pendulum swung away from the state hospital model and toward community-based care. Had the community mental health centers envisioned by the CMHCA been developed to meet the needs of the full spectrum of psychiatric patients, including those with special needs, the system would likely have evolved differently. Instead, a succession of U.S. presidents and Congresses reduced and eventually eliminated federal funding for community-based mental health centers. Meanwhile, Medicaid reimbursement was and has since been prohibited for treatment of individuals aged 22 to 64 hospitalized in psychiatric facilities of more than 16 beds, a provi- sion known as “the institutions of mental disease (IMD) exclusion.” This economic disincen- tive efficiently motivated states to downsize or close existing state hospitals and discouraged private enterprise from developing alternatives of more than 16 beds. In 2014, NASMHPD’s The Vital Role of State Psychiatric Hospitals described this evolution of state hospitals. The report found that although some states had succeeded in building community-based systems or aspects of them, and peer-provided recovery services had begun to emerge, demand for mental health services had often outstripped community resources.9 For some populations, more tailored systems developed. Mental health services for children, for example, shifted to emphasize retention in family settings and brief placements rather than longer institutional care. For some conditions (e.g., neurosyphilis and epilepsy), medi- cal discoveries produced cures or effective treatments for disorders that previously had been treated in state hospitals. For older adults, other long-term support services and models were crafted, and nursing homes took over the role that state mental health institutions had 8 n BEYOND BEDS: THE VITAL ROLE OF A FULL CONTINUUM OF PSYCHIATRIC CARE