The Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 was signed into law amid great fanfare. Unfortunately, after less than two decades of existence it became painfully clear that existing community-based mental health services, once hailed by President John F. Kennedy as a bold new approach to treatment, were unprepared to address the challenge of effectively serving those who faced what we now deem as serious and persistent mental illnesses (Foley & Sharfstein, 1983). In spite of this criticism, there were unquestionable successes associated with the arrival of this new public utility. Community mental health centers allowed unprecedented access to services for people suffering from a range of personal maladies as well as those concerned by issues ranging from the quality of their marriage to their ability to parent. Yet, where untreated anxiety and unsatisfying marriages can be reasonably hidden, the plight of those struggling to navigate independent living and community life with conditions such as schizophrenia was harder to ignore. Homelessness was a highly visible, if sometimes overstated manifestation of the problem, and those with more intimate contact with individuals trying to survive on their own witnessed more subtle but troubling issues such as social isolation and the inability to meet basic needs. Soon the voices of diverse stakeholders, from local law enforcement to organized groups of family members concerned about their loved ones, would no longer remain silent. Something had to change.
In response, specialized community-based programs geared to those then commonly referred to as the chronically mentally ill proliferated. In the search for solutions many were impressed with the pioneering work of Mary Ann Test and Leonard Stein at the Mendota State Hospital in Wisconsin (see Stein & Test, 1980), and the resulting PACT model seemed to offer a comprehensive package of services needed to increase community tenure. Case management, viewed by some (often simplistically) as a direct extension of classic social casework, soon became a routine service, and was often delivered in the recipient’s home and community (Rapp & Goscha, 2006; Sullivan & Floyd, 2012). Other aftercare services, such as partial hospital programs, also grew exponentially. Taking notice of these developments, the National Institute of Mental Health unveiled the Community Support Program concept, underscoring a basic premise that community mental health services should now offer a specialized menu of services, including case management, crisis stabilization, and psychosocial rehabilitation services all targeting this once arguably neglected population (Turner & TenHoor, 1978).
Soon there was mounting pressure on all community mental health centers to develop such programming for people with serious mental illnesses, along with increasing fiscal incentives to do so. While these initiatives were needed and applauded by advocates as they were launched, the overall backdrop muted whatever optimism there was that these efforts would significantly improve the lives of recipients. The term chronically mentally ill did not engender an expectation of progress or success, and in many ways these specialty services, the professionals who staffed them and clients themselves were situated well off stage from mainstream programs, both philosophically and even spatially. Social work, and other similar professions, had long been attracted to various forms of psychoanalytic practice and theory (see Starnino, 2009). Therapy so construed was an office-bound service with a unique terminology and logic and, in practice, can be viewed as an art. In contrast, case management was predicated on activities such as skills building, focused on the attainment of concrete goals that arise in daily life, resource acquisition, and advocacy. Because emphasis was placed on the more practical aspects of life, case management and community support roles were perceived to be the purview of paraprofessionals and primarily concerned with maintenance and monitoring as opposed to growth and change (see Sullivan & Floyd, 2012). Even in the face of such scant encouragement, a cadre of dedicated professionals, family members, and former and current recipients of care soldiered on.
Sometimes it takes time for science to catch up. Professionals on the ground, and persons with lived experience both inside and outside the system could provide a different narrative about the course of conditions like schizophrenia. Yes, a formidable task was at hand, and some were forever trapped in a vortex. Others, however, seemingly surmounted this challenge with or without the assistance of professional services. Hence, while endless research reports placed terms such as symptoms, relapse, and recidivism in bold relief, a closer look told a more nuanced story. It was a story that solid research began to back up. The pioneering work of Courtenay Harding and associates, who studied a cohort of individuals diagnosed with serious mental illness for over three decades, confronted historic, as reflected in the original concept of dementia praecox, and popular notions of chronicity and pessimistic assumptions about the life course for people so diagnosed (Harding, Brooks, Ashikaga, Strauss, & Breier, 1987; Harding, Zubin, & Strauss, 1987). Similar studies would soon affirm that Harding’s work was not an anomaly; in fact, Bellack and Drapalski (2012) report that, with over 20 long-term studies of schizophrenia accounted for, the data shows that “overall some 50% of people with careful research diagnoses appear to have a good outcome, with substantial reduction in symptoms, and good quality of life and role function over extended periods of time” (p. 156). It truly was time for a reexamination of some commonly held assumptions and perhaps further modifications in the type, range, goals, and values of service delivery.
THE DAWN OF THE RECOVERY MODEL
A convergence of factors began to significantly alter the landscape of mental health practice. In the mid-1980s the strengths model was born, with applications in outreach case management, and early returns suggested that this service had a positive impact on important outcomes such as community tenure, and goal accomplishment in key areas such as independent living and vocational activities (Rapp & Wintersteen, 1989). Emphasis was placed on the partnership between the professional and the recipient, as well as the acquisition of community resources needed for the individual to realize the goals that they identified as important to them (Rapp & Goscha, 2006). In a similar vein, Assertive Community Treatment (ACT) teams emerged, and the values that underpinned this model mirrored those espoused in strengths-based approaches. On the policy front, the National Alliance for the Mental Ill (now National Alliance on Mental Illness) grew from a grassroots organization, primarily of family members, to a powerful national advocacy organization. In addition, current and former recipients of mental health services and, in some cases, others who had forever remained outside the system, were no longer content with standing in the shadows. For many, Judi Chamberlin’s classic On Our Own (1978) was a long-awaited manifesto asserting the rights of those who had been diagnosed and treated in the mental health system (and those who had steadfastly refused care), and introduced professionals and the public to the term “psychiatric survivor,” underscoring a sense of being misunderstood, dismissed, and mistreated while under care.
The time was ripe for change. In this evolving context, Bill Anthony, one of the giants in the field, published one of the most important papers of the period, proposing the concept of recovery as an attainable goal for individuals, and a viable guiding vision for mental health services offered to those facing serious mental illnesses. Offering a tentative definition of the term, Anthony (1993) suggested that “Recovery, as we currently understand it, involves the development of new meaning and purposes in one’s life as one grows beyond the catastrophic effects of mental illness” (p. 20).
Since this time the concept of recovery has been debated and dissected in so many ways that the importance and immediate impact of Anthony’s declaration may now be forgotten. Recovery was a concept that seemed to gather, even if loosely, all of the threads and trends described above together, and offered an uplifting mission and sense of purpose that the field desperately needed. In essence it provided a measure of hope for all. Practitioners, whose work was often devalued by their peers and who struggled alongside clients with the setbacks that inevitably came, were offered an antidote for professional pessimism and could point to a meaningful overarching goal to sustain them in their work (Perkins & Slade, 2012; Roe, Rudnik, & Gill, 2007). First-person accounts, which have been a staple in mental health circles for generations, whether offered as the personal biographies of individuals or collected by researchers trying to grasp the experiences of others, now had a useful organizing framework. The quest was to try to glean the lessons that this rich material had to offer. In addition, the various service components that had emerged in piecemeal fashion could now be judged against a standard, even if that standard was barely operationalized. Meanwhile, many of those who had directly experienced that which we called serious mental illness could remind professionals that recovery was something they had experienced and understood all along, even if there wasn’t an attractive phrase available at the time to describe it (see Deegan, 1988; Glover, 2005).
DESCRIBING AND DEFINING RECOVERY
It stood to reason that so many of the early efforts to describe, understand, and define recovery drew from the accounts of persons with lived experiences. Data from those same long-term studies that were grist for this new paradigm could report on the status of a cohort of research subjects, but is still at a loss to truly explain the findings. This was particularly so when research, like that conducted by Harding, discovered that many former inpatients forged satisfying lives without the involvement of professionals—a finding that is now recognized as far from unusual (Glover, 2005; Ostrow & Adams, 2012). Certainly it was widely believed that proper medication and adherence to same accounted for some of the variance in client outcome. Nonetheless, even the most fervent advocates of pharmacological interventions were forced to admit that this approach was marked by a degree of hit and miss, with some clients showing no benefit whatsoever. It was also difficult (and still is) to explain the heterogeneity of outcomes when there is lack of precision in diagnosis and treatment, and even less certainty determining precisely the etiology of major mental illnesses.
Even in the face of these limitations, first-person accounts consistently identified a set of broad factors that seemed vital in the process of recovery. In an early study that drew from the perspectives from those who were successfully residing in the community, Sullivan (1994) found that many who had received services identified elements of their care, in particular medication and individual professionals (especially case managers), as important to their success. It is significant that when these individuals described helpful professionals the overwhelming focus was on their overall supportiveness, their personality, and the strength of the bond that developed between them, as opposed to the use of a specific type of intervention. Over time this finding has been repeatedly reported and reinforces the emphasis many training programs place on the power of the helping alliance. Especially noted is the importance of remaining enthusiastic, hopeful, and practicing in a collaborative fashion (Bassman, 2001; Liberman & Kopolowicz, 2015; Repper, 2000; Rapp & Goscha, 2006; Torpor, Borg, Di Girolamo, & Davidson, 2011).
Respondents in this study also highlighted items that were unforeseen at the time, such as the person’s ability to recognize and respond effectively to symptoms, religious and spiritual beliefs and practices, support via romantic relationships, attending to overall health, and simply coming to terms with and accepting the challenge that had been presented to them. While these self-reported contributors to success may have been surprising decades ago, today, largely through similar self-reports, they are widely acknowledged.
In their attempt to unravel the key factors in the recovery experience, Anderson, Oades, and Caputi (2003) suggested that crucial components included finding and maintaining hope, building a positive identity, finding meaning in life, and taking responsibility for one’s life and well-being. Taking a deep look at the literature available at the time of their review, Onken et al. (2007) identified a wide range of factors associated with recovery, including hope, sense of agency, self-determination, meaning and purpose, and extraindividual forces such as social connectedness and integration, and the importance of having choice and power. Perkins & Slade (2012), who add that there is no blueprint to follow, note the factors of hope, control, and opportunity as contributors to recovery. The truth is that there are now a dizzying number of narratives and exploratory studies, far too numerous to be covered here, all geared to understand the essentials of recovery. Many of these works highlight the same themes detailed above.
There have also been attempts to view recovery as a series of stages or steps. Strauss (1989) was among several researchers who urged others to seriously study the subjective aspects of illnesses such as schizophrenia. His work highlighted the different phases that an individual might experience as they grappled with their condition, and introduced terms such as wood shedding and mountain climbing as descriptors of such phases. Building from this tradition, Andersen and associates (2003) speak of the sequence of moratorium, awareness, preparation, rebuilding, and growth. However, these reports, and many others like them, have acknowledged that the road to recovery is not a series of graduated steps that one travels sequentially and to date there is a lack of consistency in the descriptions of these stages, which are largely derived from qualitative research.
Influenced in part by the clinic...