Disability: Psychiatric Disabilities
- W. Patrick SullivanW. Patrick SullivanPatrick Sullivan is Professor at the Indiana University School of Social Work. He also served as Director of the Indiana Division of Mental Health and Addiction from 1994-1998. While earning a Ph.D. at the University of Kansas, Sullivan helped develop the Strengths model of Social Work practice, and has extended the model in mental health and addictions treatment. He received the Distinguished Hoosier Award from Governor Frank O’Bannon in 1997 and earned the Sagamore of the Wabash, Indiana’s highest civilian award from Governor Joseph Kernan in 2004 for his work in mental health and addictions. Sullivan currently serves on two national projects co-sponsored by the Council on Social Work Education; Recovery to Practice and the Social Work and Integrated Behavioral Health Curriculum Project.
The psychosocial catastrophe that accompanies serious mental illness negatively impacts individual performance and success in all key life domains. A person-in-environment perspective, and with a traditional and inherent interest in consumer and community strengths, is well positioned to address psychiatric disabilities. This entry describes a select set of habilitation and rehabilitation services that are ideally designed to address the challenges faced by persons with mental illness. In addition, it is argued that emphasis on a recovery model serves as an important framework for developing effective interventions.
Updated in this version
Statistics updated as well as the bibliography to reflect recent research. Additional updates made to include the Patient Protection and Affordable Care Act.
Once nearly hidden from view and public consideration, mental illness is considered a significant social problem around the globe today. In the United States alone, the prevalence rate for any form of mental illness is estimated to be as high as 30%, with approximately 5 to 6% of this group classified as facing serious and persistent disorders (Kessler et al., 2005). In addition, the direct and indirect costs of mental illness are staggering. Indeed, Insel (2008) has reported that the costs associated with serious mental illness exceed $300 million. These costs continue to rise, in part, due to an increased demand for treatment, particularly in the general medical service sector (Kessler et al., 2005). Persons identified as seriously and persistently mentally ill—and this encompasses categories such as schizophrenia, bipolar disorder, and major depression—face particularly daunting personal challenges. As a group, they are the most costly to treat, commonly receiving specialized services for years, often in the most intensive and most expensive settings. Germane to the concept of serious and persistent mental illness is a consideration of disability. Disability can be a direct function of the illness process, but it is also a function of the social sequela that follows. Indeed, in many ways, serious and persistent mental illness can be viewed as a psychosocial catastrophe (Spaniol, Gagne, & Koehler, 2003). From a social work perspective, it is vital to understand that disability is defined by, and a reflection of, social processes, as well as the result of personal misfortune. Accordingly, it is critical that helping endeavors respect the profession’s long-standing person-in-environment perspective and commitment to shared decision making (Peterson, 2012).
Historically, those deemed disabled were seen as unable to perform key social tasks or occupy valued roles. While some progress has been made, vestiges of this perspective linger to this day. Although all those deemed disabled deal with stigma, the general public still largely misunderstands mental illness, and reacts to this condition with fear. Psychiatric challenges often remain hidden from view, but when symptoms of illness become too pronounced to ignore, the impulse to segregate and exclude can become strong. To be considered mentally disabled is to be judged against notions of normative social behavior and functioning. As was true with others who face more visible challenges, there was a time when no appreciable consideration was given to the notion that those with serious mental illnesses could aspire to, and participate in, the activities and roles that confirm full citizenship.
The Emergence of Community-Based Services
A perfect storm of forces converged in earnest during the middle and late 1960s to provoke a significant depopulation of psychiatric hospitals. Advances in psychopharmacology, key legal decisions, fiscal pressures on individual states, the enactment of Medicaid and Medicare, and a general interest in human rights and exposés of abuses in institutions (Goffman’s Asylum; Willowbrook) all conspired to create a movement that has been labeled retroactively as deinstitutionalization (Foley & Sharfstein, 1983; Rothman, 1990). Bachrach (1986) argued that as the seriously mentally ill struggled to find a foothold in community life and practitioners strived to help them, the disabilities these individuals faced were displayed in bold relief. As a result in 1977, the National Institute of Mental Health unveiled the Community Support Program, recommending structural and programmatic changes in the delivery of mental health services. One critical component of this model—psychosocial rehabilitation services—underscored that services should go beyond a medical focus and also direct attention to the disabilities associated with mental illness (Turner & TenHoor, 1978). Psychiatric disability can be understood from a range of perspectives, all having utility in devising the services and interventions that can be useful to those striving to reach their full potential. For example, a medical or primary perspective focuses squarely on the illness process and the immediate symptoms that are hallmarks of the given condition. A second level, or functional model, is concerned with the psychosocial impact of illness. Here, the concern switches to the plethora of problems of living that arise as a result of illness, and efforts are made to help individuals in those activities that directly impact their quality of life. A final perspective targets social opportunities and legal rights, highlighting the roles of stigma, discrimination, and rejection as equally disabling (see Asch & Mudrick, 1995; Bachrach, 1986; Barusch, 2006; Corrigan, 2003).
As the field of psychosocial (or psychiatric) rehabilitation has evolved, the pessimistic outlook that professional helpers once shared with the general public about those deemed seriously and persistently mentally ill has been supplanted with a more hopeful and optimistic view. In part, this new perspective, reflected in the concept of recovery, was fueled by longitudinal studies that challenged the dominant belief that the courses of illnesses like schizophrenia were always chronic and unbending, and similar reports that suggested that positive outcomes were possible following diagnosis (Harding, Brooks, Ashikasa, Strauss, & Breier, 1987a, 1987b; Harding, Zubin, & Strauss, 1987; McGlashan, 1988; Sullivan, 1994a). These studies have also been buttressed by accounts of former and current consumers of mental health services who are now living rewarding lives (Deegan, 2003; Ochocka, Nelson, & Jabsen, 2005; Schiff, A, 2004; Sullivan, 1994b). From a cost standpoint alone a return to the widespread use of long term care options, particularly in state operated facilities, is highly unlikely. Therefore, efforts to improve community-based interventions reduce the stigma associated with mental illness and increase opportunities for those facing mental illnesses within their community of origin is warranted.
Recovery, Disability, and Psychosocial Rehabilitation
In response to the longitudinal studies that offered cause for optimism, the development of more effective community-based programs, and the voice of the consumer, the concept of recovery has emerged as a guiding principle and framework for mental health services. Recovery has been defined as “a way of living a satisfying, hopeful, and contributing life even with the limitations caused by illness” (Anthony, 1993, p. 15). It is also a deeply personal process—experienced as one strives to live a fulfilling life in the presence of widespread social stigma and seemingly endless insults to self-esteem and personal identity. Indeed, Spanoil (2001) notes, “while the illness itself can cause a major disruption in a person’s life, stigma and discrimination … can further disconnect people and represent serious barriers to recovering” (p. 175).
Although there have been great strides in our understanding of the social forces that impede recovery, the reality is that those with serious mental illnesses “have a unique set of disabilities that interfere with their life goals” (Corrigan, 2003, p. 347). In mental health jargon these individuals display both “positive” and “negative” symptoms. Positive symptoms, or things that have been added as a result of illness, include visible symptoms and behaviors that others will view as odd and disturbing, including hallucinations and other behavioral idiosyncrasies. Negative symptoms, or things taken away, are often the focus of habilitation and rehabilitation services. These are seen in the form of lethargy, difficulties in interpersonal communication, cognitive deficits and the like. In combination, these factors impede the ability of people to flourish in community settings, particularly in the areas of education, work, independent living, positive leisure, and in the ability to form and sustain meaningful intimate and personal relationships. The simplest model used to explain serious mental illness posits that basic psychobiological factors may render some persons particularly vulnerable to mental illness. It is also speculated that these illnesses are triggered by the stress of life. Certainly, new tools have increased our understanding of the brain, but our knowledge of the precise etiology of mental illness is still largely incomplete. Advances in psychopharmacology continue, and newer medications have a tendency to produce fewer negative side effects. Today it is well accepted that medication is an important ingredient of effective care, although there are a significant percentage of individuals who derive little benefit from their use (see Bentley & Walsh, 2006; Mellman et al., 2001). When effective, medication can reduce harmful symptoms, and help people organize their thoughts. However, medication alone is not enough to help individuals thrive in personal and community life (Eack, Newhill, Anderson, & Rotondi, 2007).
As a personal process, recovery may unfold with or without professional intervention. Recovery may be an internal process reflecting mood or attitude, or one marked by observable behavior and achievements. In many ways it is a subjective process, best understood by the person who is striving to surmount the devastation caused by mental illness. Yet, many facing mental illnesses seek, or are directed to, mental health professionals. Psychiatric rehabilitation services are designed to deal directly with those life challenges presented by serious mental illnesses.
Anthony (1992) suggests “the clinical practice of psychiatric rehabilitation, just like its counterpart in physical rehabilitation, comprises two broad intervention strategies: development of client’s skills and development of client’s supports” (p. 166). Corrigan (2003) has offered an integrated model of psychiatric rehabilitation that underscores the wide range of life domains that must be addressed if recovery can be realized. In general, the thrust of rehabilitation has been strengths-based, and “is positive in focus, reflecting an individual’s possibilities rather than his or her limitations” (p. 349).
A staple in specialized mental health rehabilitation services has been training in a wide range of skills, including interventions aimed to improve the ability of people to cope with psychiatric symptoms and stress. The areas targeted are broad, but often include matters such as personal hygiene, interpersonal communication, and vocational and independent living skills. In the most systematic programs, training modules and curriculums are developed, and the interventions are guided by principles of social learning (Corrigan, 2003; Nemac, McNamara, & Walsh, 1992). The persistent criticism of these methods involves the difficulty consumers have transferring skills learned in structured programs to community living. Extensions of this approach emphasize the need for a multifaceted effort that includes the use of actors who model the target behavior, rehearsal and practice, homework, and supports in the community (Corrigan, 2003). Unfortunately, many day or partial hospital programs fall well short of this standard, and fail to customize interventions to the needs of the individual. These programs tend to be unstructured, place few demands on consumers, and are rarely goal-focused.
As consumers have shared their experiences, professionals have begun to understand the various ways people have learned to cope with the symptoms of illness. Auditory hallucinations can be particularly vexing to deal with, and reports of consumers have been vital to developing strategies to cope with them (Ritsher, Lucksted, Otilingam, & Grajales, 2004; Romme & Escher, 1989). Equally important has been individual’s ability to recognize signs of stress and other indications that things are going badly. Consumers often choose to organize daily life to reduce stress, pay greater attention to matters like sleep and diet, consult with professionals or draw support from peers, or fall back on their spiritual beliefs. While an understanding of these strategies can guide the development of supportive services, recovery is a unique process, and professionals should be cautious when assuming that a tool that helps one individual will have the same positive effect with another.
In many ways, to experience serious mental illness is to experience loss. Spanoil et al. (2003) note that what people are recovering from includes the loss of a sense of self, loss of connectedness, loss of power, loss of valued social roles, and perhaps the deepest cut of all, the loss of hope (see Sullivan & Floyd, 2013). Recovery is also an interactive process. A key component of comprehensive rehabilitation programs is service designed to increase social support. At times, no professional intervention is needed, as peer support services and clubhouse models are predicated on the philosophy of mutual help (Glynn, Cohen, Dixon, and Niv, 2006, Solomon, 2004). At other times, professionals can be particularly helpful in working with families, and in efforts to create stronger connections with others in the community. Of particular help to families has been the work of the National Alliance on Mental Illness (NAMI). Local NAMI chapters offer support groups for family members dealing with a loved one who suffers from mental illness. Primary consumers have also formed mutual-support and advocacy groups that serve to offer information and advice to members, as well as impact public policy and protect individual rights. The relationship between professional helpers and families caring for a loved one with mental illness and sometimes between patients or consumers and their families have been fraught with tensions and contradictions at time. In recent decades, the legacy of theories that blame families has largely been shed (Pratt, Gill, Barrett, & Roberts, 1999), and in its place a partnership model has developed. Families can become isolated from others due to the time and effort needed to care for a mentally ill member, and the social stigma that follows. When support and information are given in sensitive ways and families are offered practical advice and tools that they can use day to day, the primary consumer benefits as well. Early signs of relapse can be identified, hospitalization can be avoided, and all parties begin to view life as more manageable.
For recovery to be realized, however, mental health consumers must have opportunities to participate in community life and assume valued social roles. Outreach case management, particularly when guided by the strengths perspective, highlights resource acquisition as vital to success. The strengths model is predicated on two primary assumptions. First, it is argued that individual behavior is heavily influenced by the resources available to people. The second principle states that our society, at least in word if not in deed, values equal access to resources (Rapp & Chamberlain, 1985). The latter principle flows directly from the social work’s traditional interest in social justice, a key consideration for people with all forms of disability, and also calls forth the profession’s long-standing commitment to advocacy for vulnerable citizens. This is vitally important given the stigma, segregation, and rejection experienced by those with mental illnesses.
Outreach case management is a versatile service (see Rapp & Goscha, 2006). Outreach case management is not executed behind a desk or simply by telephone. By working in environments where consumers live, work, and play, case managers can help consumers learn and practice skills needed for successful community living, and increase the odds that skills learned in-program are transferred to real-world settings. Case managers can also help consumers in times of distress, watch for signs of impending difficulty, and work with them to develop and execute a plan of action to avoid relapse. With consumers taking the lead, goal and case planning is at the heart of the case management process. By breaking larger goals into manageable steps consumers can learn a problem-solving method that has utility in other life spheres. Finally, the strengths model highlights the use of natural community resources as a first priority. These resources, generally tied directly to consumer-established goals, also help individuals establish bonds with others outside the professional community and their current peer group. Case management is an important aspect of Assertive Community Treatment (ACT) an evidence-based service delivery model based on the use of multidisciplinary teams who share responsibility for a designated caseload (Corrigan & Mueser, 2012).
Given the important role of work in people’s lives, vocational rehabilitation has been a central aspect of mental health services throughout history. Over the past 20 years, the traditional “train, then place” approach has been rejected in favor of the supported employment model based on the principle of choose-get-keep. Here, the consumer’s vocational interests are quickly identified, and job placement occurs as rapidly as possible, rejecting the notion that a long pre-vocational training phase is necessary to prepare people for work. The model is predicated on the assumption that “all people—regardless of the severity of their disability—can do meaningful, productive work in normal settings, if that is what they choose to do, and if they are given the necessary support” (Anthony & Blanch, 1987, p. 7). Key principles of the model include a focus on competitive employment, rapid job search, integration of mental health and rehabilitation services, consumer choice, and the availability of time-unlimited individualized support (Bond, 2004; Salyers, Becker, Drake, Torrey, & Wyzik, 2004). Job coaches, job sharing, and other innovative methods are used to help people meet the demands of competitive employment. Extensions of this model have also been developed in education and independent living (Rog, 2004). It should be noted that some consumers had viable career interests before the onset of illness and hope to resume their chosen profession or training. Like people suffering from physical challenges, those considered psychiatrically disabled also long for a chance to realize their potential and pursue life goals. Legislation such as the Americans with Disability Act provides a measure of protection against discriminatory practices. Such legislation, plus advocacy efforts and changing social mores, can help hold the door open to greater social opportunities.
From here, well-designed and executed rehabilitation services, like those described earlier, can provide needed support, ignite individual strengths, and help consumers learn the skills needed to exercise their individual rights (Corrigan & Mueser, 2012). However, these opportunities can be fleeting. The U.S. Surgeon General’s report underscored the persistent gaps in the mental health system (U.S. Department of Health and Human Services, 1999). Lack of capacity and access to specialty services leaves consumers in vulnerable situations. Jails have become de-facto hospitals, and professionals are left to manage ever-growing caseloads. The advances in treatment and care described above are undermined in a poorly funded treatment environment. Likewise, changing political winds can emphasize individual deficiencies as the source of problems like homelessness, and minimize the role of restricted opportunity and stigma. This can result in the continued criminalization of mental illness and a retreat from the goal of true community integration for those with these challenges.
Recent changes in the policy environment, highlighted by the passage of the Patient Protection and Affordable Care Act may result in an increased emphasis on activities that fall under the notion of rehabilitation and long-term care. It is recognized that the effective management of what are viewed as chronic conditions not only enhances the health and well-being of people, but is fiscally sound policy (Wagner et al., 2001). Additionally, Accountable Care Organizations, an increasingly popular method of organizing health care services, are predicated on the willingness of a designated entity to assume clinical responsibility (and fiscal risk) for a defined population. The prudent use of community interventions and proven rehabilitation strategies in behavioral health can potentially reduce the demand for more intensive and expensive specialty care (Lewis, Larson, McClurg, Boswell, & Fisher, 2012). Likewise, the Patient Centered Medical Home model may become an important method of organizing integrated health care for those with serious and persistent mental illnesses (Alakeson, Frank, & Katz, 2010). Here, the primary home for health care services would be a specialty mental health provider. As in all integrated care approaches the intent is to focus on the whole person. Thus, those chronic health conditions, such as heart disease and diabetes, that negatively impact quality of life and results in an early death among those facing serious mental illnesses, can receive greater attention.
Social workers have played and will continue to play a strong role in the mental health system. Many entry-level professionals begin their careers as case managers, and social workers are prominent in the community mental health system in direct practice roles, as well as in administration and leadership. In order to develop effective programs efforts must be extended to determine best practices and also shape the political and policy context necessary for success. Yet, executing best practices still requires that professionals not only have the requisite technical skills, but well-developed interpersonal skills. In a seminal article Deegan (1990) has noted that the behaviors and attitudes of professionals can, and do, break the spirit of those struggling to recover from the challenges presented by serious and persistent mental illness. Accordingly, in this field, as much as any area of interpersonal practice, social workers must work in partnership with recipients of service and maintain an attitude of hopefulness about the prospects of recovery (Mancini, Hardiman, & Lawson, 2006; Sullivan & Floyd, 2013).
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