Conditions for Empowering People with Severe ...

Conditions for Empowering People with Severe Mental Illness Author(s): Donald M. Linhorst and Anne Eckert Source: Social Service Review, Vol. 77, No. 2 (June 2003), pp. 279-305 Published by: The University of Chicago Press Stable URL: http://www.jstor.org/stable/10.1086/373909 . Accessed: 08/09/2014 09:58 Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp

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Conditions for Empowering People with Severe Mental Illness Donald M. Linhorst Saint Louis University

Anne Eckert Missouri Department of Mental Health

We contend that people with severe mental illness can be empowered though participation in decision making when certain conditions are met. Applying the work of Joel Handler, we identify seven conditions that must be present for meaningful participation to occur. Some conditions are internal to the person, such as having controlled psychiatric symptoms and decision-making skills, while others are a function of the mental health system. We apply the conditions to an analysis of empowerment at a public psychiatric hospital. We conclude with the roles of mental health clinicians, administrators, and policy makers in creating conditions for empowerment.

Historically, people with severe mental illness have been viewed as powerless. In his seminal study of psychiatric hospitals in the 1950s, Erving Goffman (1961) describes public psychiatric hospitals as total institutions that lead to apathy, passivity, and resignation among patients. Based on her and others’ experiences of being hospitalized, Judi Chamberlin (1978) reaches a similar conclusion that psychiatric hospitals promote weakness and dependency. Paul Carling (1995) also finds a sense of powerlessness and hopelessness among people with mental illness who reside in the community. He bases this in part on the general public’s misperception of mental illness and of people with mental illness, on a sense of paternalism held by many mental health professionals, on an internalized sense of incompetence among many with mental illness, Social Service Review ( June 2003). 䉷 2003 by The University of Chicago. All rights reserved. 0037-7961/2003/7702-0006$10.00


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on discrimination against the mentally ill, and on inadequate support for mental health services. While we may straightforwardly recognize the lack of power, defining empowerment is more difficult (Rappaport 1984). Lee Staples, for example, defines empowerment as “the ongoing capacity of individuals or groups to act on their own behalf to achieve a greater measure of control over their lives and destinies” (1990, p. 30). Similarly, Suzy Croft and Peter Beresford define it as “the redistribution of power and people gaining more say and control over their lives” (1992, p. 32). Implicit in these definitions of empowerment is an active participation in making decisions that relate to important areas of one’s life. Others operationalize empowerment in terms of individual levels of decision-making authority in particular situations (Means and Smith 1994). Adding to its complexity, empowerment is context specific and can occur at the individual, organizational, and policy levels (Hasenfeld 1987; Segal, Silverman, and Temkin 1993; Harp 1994; Zimmerman 2000). Someone can be empowered in one decisional area but not another. Over time, there has been increased recognition of the importance of empowering people with severe mental illness by increased participation in decision making. People with mental illness who participate in decision making have a higher level of satisfaction with services and greater self-efficacy, confidence, and hopefulness, as well as an increased ability to cope with daily life (Holland et al. 1981; McCarthy and Nelson 1991; Bassman 1997; Salzer 1997; Chinman et al. 1999). They also are more likely to reach their treatment goals (Bassman 1997). Behaviors of hospitalized clients improve when they participate in setting ward rules and establishing daily routines (Holland et al. 1981). Mental health agencies that involve clients in program development are more likely to create innovative programs that are responsive to clients’ needs (Katan and Prager 1986; Salzer 1997). Over the last 30 years, at least three developments have supported an increase in decision making of people with severe mental illness. One is psychiatric (or psychosocial) rehabilitation, which seeks to improve the level of functioning of people with mental illness through skills training and the provision of any necessary community supports (Anthony and Liberman 1992). Important psychiatric rehabilitation principles include client choice, an emphasis on strengths and wellness, and client empowerment (Cook and Hoffschmidt 1993). The second development is the application of the recovery model to people with mental illness. This model includes the promotion of a sense of self and hope, of empowerment, of client choice, of client involvement in planning and providing services, and of social supports (Fisher 1994; Deegan 1997; Young and Ensing 1999; Jacobson and Greenley 2001). The third development is the mental health consumer movement. This movement has its roots in the reactions of people with mental illness


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who seek to defy the labeling and institutionalization that they have encountered from mental health professionals (Chamberlin 1990; Mowbray and Holter 2002). Important components are consumer-run support groups and programs, consumer employment in social service agencies, empowerment, and advocacy efforts to promote political and social change (Chamberlin 1990; Mowbray and Holter 2002). Despite these efforts, increased client involvement in decision making is coming slowly and inconsistently. For example, Shailesh Kumar (2000) finds that many mental health professionals continue to devalue client participation in treatment decisions, based in large part on the assumption that people with mental illness are incapable of making decisions on their own behalf. Jeffery Geller and colleagues (1998) conclude that the involvement of people with mental illness in mental health policy making varies widely across states. They call on mental health authorities to make a greater commitment if client views are to be integrated into the decision-making process. This slowness and inconsistency could indicate that it is not possible to empower people with severe mental illness through involvement in decision making. Joel Handler (1992) argues that it is possible to empower vulnerable populations. For him, the greater question is not whether it is possible but under what conditions such participation is likely to occur. He writes, “The task is to discover the conditions that will facilitate the creation and nurturing of empowerment in discretionary dependent relationships” (p. 291). In his various works, Handler (1986, 1990, 1992) studies the decision-making processes between parties of unequal power in a range of areas, including informed consent in medicine, special education, community care for elderly persons who are frail and poor, and water pollution regulation. From these diverse settings, he develops a general set of conditions for empowerment that can be applied to the analysis of decision making in relationships of unequal power. We identify seven conditions that promote the empowerment of people with severe mental illness through participation in decision making. We derive these by applying the work of Handler (1990), as well as by incorporating the literature on general empowerment and people with mental illness. These conditions should be useful as a structure for analyzing decision-making scenarios involving people with mental illness and for directing change to increase participation in decision making. We apply the seven conditions to an analysis of decision making among people with severe mental illness who reside in a public psychiatric hospital providing long-term care. We selected this facility in part because of the large number of anticipated obstacles to empowerment among people with mental illnesses. These illnesses are severe enough to require hospitalization for extended periods of time. Because empowerment of people with mental illness occurs at multiple levels, we examine decision making in treatment planning, in the residential unit,


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in organizational decision making, and in mental health policy making. We conclude with a discussion of the role that mental health clinicians, administrators, and policy makers play in creating the conditions for empowerment of people with severe mental illness. In two previous articles, we provide detailed findings of the involvement of clients at this same facility in treatment planning (Linhorst et al. 2002) and in organizational decision making (Linhorst, Eckert, and Hamilton, in press). In our application of the conditions for empowerment to the facility, we incorporate some findings that we also report in these two articles. This article makes two unique contributions over and above what is revealed in the other two. Rather than focusing on one decision-making area, the central purpose of this article is to argue for a set of conditions for empowering people with severe mental illness that apply to all decision-making settings. In doing this, we draw on a largely different body of literature, compared to the previous two articles. This article also provides findings pertaining to the involvement of facility clients in residential decision making and in mental health policy making, which we previously have not reported.

Methodology Facility Description The facility to which the conditions for empowerment are applied is one of four long-term psychiatric hospitals operated by the Missouri Department of Mental Health (DMH). All DMH hospitals are accredited by the Joint Commission for the Accreditation of Healthcare Organizations ( JCAHO). The long-term hospitals are considered forensic facilities because criminal courts commit the vast majority of their clients. The largest category of forensic clients consists of those found not guilty by reason of insanity (NGRI). Release from hospitalization for NGRI clients requires an extensive review process by personnel from both the mental health and criminal justice system, with circuit court judges holding final release authority (Linhorst and Dirks-Linhorst 1999). The criminal courts admit other forensic clients for restoration of competency to proceed to trial. A risk rating system developed by the DMH central office largely determines the security level in which forensic clients reside, as well as their freedom of movement both within and outside of the facility. The facility where we analyzed empowerment has 212 beds arranged as four 25-bed wards and 14 10-bed cottages located on facility grounds. Census always is at or near capacity. Approximately 80 percent of the clients studied are male, 60 percent are African American, and the average age is 44 years. Seventy percent are NGRI clients, 10 percent are judged incompetent to stand trial, and 20 percent are nonforensic



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clients who were admitted by their legal guardians. Almost 70 percent of clients are diagnosed with schizophrenia. Prominent secondary diagnoses include substance abuse disorders (55 percent), personality disorders (50 percent), and mental retardation (15 percent). Average length of hospital stay is approximately 6 years. Overall, NGRI clients are higher functioning than nonforensic clients because NGRI clients must meet more stringent release requirements. One study of the four DMH long-term hospitals finds, for example, that the mean Global Assessment of Functioning (GAF) score among NGRI clients is 53 (indicative of moderate symptoms), compared to 38 among nonforensic clients (indicative of major impairment in several life areas). In addition, 55 percent of NGRI clients have GAF scores above 50, compared to just 14 percent of nonforensic clients (Linhorst and Turner 1999). The facility operates four primary treatment programs. The hospital wards are divided into three treatment programs. Two of these treatment programs also work with clients in four cottages. One hospital-based program uses a social learning model to work with the most severely mentally ill. A second program employs a cognitive behavioral approach to work with clients whose symptoms of major mental illness are more controlled but whose behaviors relate to personality disorders preventing their release. A third program uses a psychoeducational approach. It serves clients admitted by the criminal courts due to incompetence to stand trial. Traditional treatment teams usually consist of a psychiatrist, a psychologist, a nurse, a social worker, and an occupational or recreational therapist. These teams develop treatment plans, provide treatment, and manage rehabilitation activities for clients of that program. Each of the hospital programs also has a client level system. Clients on the lower levels have less freedom of movement, fewer privileges, and fewer treatment choices. Clients improve in level as they progress through the treatment program and demonstrate behaviors that conform to level system requirements. The fourth program is located in 10 cottages and uses a psychiatric rehabilitation approach to work primarily with NGRI clients whose symptoms of major mental illness are largely controlled but who require further skill development and must demonstrate a long period of stabilization to meet statutory release criteria. Rather than using treatment teams, the cottage program assigns a case manager to each cottage. The manager oversees its operation and assists clients with developing their treatment plans. A central unit provides treatment and rehabilitation activities to clients in the cottage program. Representatives from that unit participate in treatment planning with clients and case managers. In the early 1990s, the facility’s overall organizational culture began to shift to one that places greater emphasis on client participation in decision making (Linhorst et al. 2001). The origins of this shift lie in the adoption of psychiatric rehabilitation by the long-term facilities as a complement


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to their pharmacological treatment and therapy (Linhorst 1995). Strong leadership at the executive committee level supports client involvement in decision making, particularly in treatment planning and later in organizational decision making. The executive committee wrote the facility’s vision and value statements to reflect an emphasis on client participation in decision making, providing considerable staff time and training dollars to support the vision. A supportive culture has developed incrementally, building on successful experiences with shared decision making. Realistically, however, not all staff are committed to client involvement in decision making. Data Collection and Analysis We use document reviews and focus groups to assess the level of client participation in decision making at the facility. Documents include Missouri statutes; DMH and facility mission, vision, and value statements; facility policy and procedure manuals; program manuals; and selected committee minutes. We also held focus groups at the end of 1998 with facility staff and 72 clients. We invited all facility clients to participate, although 20 percent were ineligible because their legal guardians did not return the consent forms. Thirty-five percent of all clients (43 percent of all eligible clients) voluntarily participated in the 17 focus groups. To promote openness of responses, we did not record the names of participants, and staff were not present or near the interview area. We also conducted 15 focus groups with 114 staff. Staff participants include all eight executive staff, 76 percent of the 34 middle managers and clinical supervisors, 51 percent of the 95 professional staff, and 13 percent of the 252 paraprofessional staff. To promote openness of responses, we again did not record participants’ names, and we held separate focus groups with each of the four categories of staff. To analyze the data, we first identify areas of agreement and disagreement within each focus group. We then compare client responses across programs, staff responses across levels of staff and programs. We also compare client and staff responses against each other. To protect the confidentiality of both clients and staff, we aggregate findings so that no single hospital program or cottage can be identified. Thus, we present findings for the hospital programs as one grouping and for the cottage program as another.

Conditions for Empowerment Controlled Symptoms Handler (1990) finds that clients must be free of internal constraints to meaningfully participate in decision making. One internal constraint that potentially could apply is the severity of the individual’s mental



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illness. There is substantial evidence that some people are incapable of meaningful participation in decision making because of symptoms related to their severe mental illness (Torrey 1994; Hoge and FeuchtHaviar 1995; Rosenfeld and Turkheimer 1995; Husted 1999). The presence of a severe mental illness can impede a person’s ability to concentrate, to process information, to screen out irrelevant information, and to make logical, constructive decisions. Handler (1990) reminds us, however, that decision-making capacity is context specific. Having a mental illness does not by itself prevent people from participating in decision making (Kennedy 1994; Sundram 1994; Torrey 1994). However, it does require that we examine the decision-making capacity of people with mental illness in the context of the specific decision being made. David Ferleger (1994) warns of the consequences that can occur when people with mental illness make decisions for which they are unprepared. He writes, “excessive respect for the abstract notion of ‘choice’ can lead to . . . an increase in the risk of neglect and other harms. . . . Choice must be kept in context, and other values (sometimes competing and sometimes complementary) must be weighed in the balance” (p. 75). Decision-Making Skills A second potential internal constraint is the lack of specific decisionmaking skills that enable one to participate in the decisional area. Handler (1990) finds that powerless populations often lack decision-making skills and that skill training is required before some people can participate. Michael Dillon (1994) argues that the lack of experience in decision making among people with mental illness is the primary obstacle to their participation. Similarly, Darby Penney (1994) calls for the mental health system to provide people with skills and opportunities to meaningfully participate in decision making. Michael Kennedy (1994) reminds mental health providers that they must be willing to accept that people with mental illness will sometimes make poor choices as part of the learning process. Psychiatric rehabilitation emphasizes that learning of skills can occur among people with severe mental illness, even among some people experiencing severe symptoms (Anthony, Cohen, and Farkas 1990; Cook and Hoffschmidt 1993). Examples of decision-making areas in which skill training is provided to people with mental illness to increase participation include treatment planning (Starkey and Leadholm 1997), organizational decision making (Warner 2000), and mental health policy advocacy (Hess et al. 2001). Access to Resources Handler (1990) identifies three major categories of resources that organizations may need to provide to clients in order to promote their


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participation in decision making. These include what Handler terms social movement groups, which provide emotional support to clients as well as a forum to identify common issues and to generate alternatives. He argues that an outside person might be necessary in some cases to facilitate such a group and that some clients may need an advocate to facilitate communication between clients and staff. Handler also asserts that clients may need various other resources to participate in the decision-making process, such as child care, transportation, and meals. While Handler writes primarily of client resources, he also identifies the importance of staff resources, particularly the time needed for staff to meaningfully engage clients in decision making. Others have also noted the importance of resources to empowerment. Brenda Dubois and Karla Miley (1999, p. 26) write, “empowerment hinges on having access to resources,” while Yeheskel Hasenfeld (1987 p. 479) states, “Empowerment is a process through which clients obtain resources . . . that enable them to gain greater control over their environment and to attain their aspirations.” Geoffrey Nelson and Richard Walsh-Bowers (1994) identify three main themes of empowerment, one of which is redistribution of resources. Each type of resource identified by Handler (1990) is noted in the psychiatric literature, including using client advocates and client support groups with a staff organizer to facilitate decision making (Ishiyama 1970), providing resources such as transportation and meals so that clients could participate in organizational decision making (Lord et al. 1998), and providing staff with the time to engage clients in decision making (Gutierrez, GlenMaye, and DeLois 1995). Reciprocal Concrete Incentives Handler (1990) holds that the decision-making process is augmented by reciprocal concrete incentives for clients and staff to participate together. He writes, “Reciprocal concrete incentives . . . increase the client’s value to the worker and thus change the power relationship. With these incentives, if the client fails, the worker fails. The worker, thus, has a concrete stake in client empowerment” (p. 152). Stated another way, staff are less likely to involve clients in decision making when staff have nothing to gain from that participation. We previously identified the benefits of client decision making to people with mental illness and the organizations that serve them. Thus, if staff base their professional success on the outcomes of their clients, they have the incentive to involve clients in treatment planning (Bassman 1997). Likewise, staff responsible for ward management have an incentive to involve clients in decision making because ward clients are less likely to engage in negative behaviors when so involved (Holland et al. 1981). Mental health administrators who are committed to providing quality services also have



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an incentive to involve clients in organizational decision making. In each of these cases, the performance of the staff is enhanced when clients participate. However, staff must have an awareness of how they benefit from client participation in order to meet Handler’s condition of reciprocal concrete incentives. Decision-Making Structures and Processes Handler (1990) identifies the need for arenas of conversation between the professional and the client. Bringing powerless people together with decision makers is not enough, however. Handler emphasizes that the arenas’ structures and processes must bring people together in such a way that clients are participants with something to offer, rather than merely subjects. He finds that decision-making arenas are most likely to meaningfully involve powerless people through the use of consensus or participatory models. There are a variety of mechanisms through which people with mental illness can participate in decision making. Established mental health policy advocacy groups can provide a forum (Havel 1992). Membership in or participation with users’ councils, agency advisory boards, boards of directors, task forces, study groups, and committees are also options, as is involvement in program evaluation (Carling 1995; Lord et al. 1998; Linhorst and Eckert 2002). Models for involving clients in treatment planning also are available (e.g., Anthony, Cohen, and Farkas 1990). In many instances, mental health providers will have to develop new structures and processes or significantly modify existing ones to meaningfully involve clients in decision making (Means and Smith 1994). In addition, staff may require training to work with clients in these new decision-making structures (Smith and Ford 1986). Availability of Choices and Information Handler (1990) notes the importance of having choices and access to information in achieving empowerment. He also cites Hasenfeld’s (1987) statement that the ability to choose among alternatives is at the core of power and empowerment. Client choice is emphasized in psychiatric rehabilitation (Cook and Hoffschmidt 1993; Pratt et al. 1999) and in the recovery model (Fisher 1994; Young and Ensing 1999; Jacobson and Greenley 2001). In defining empowerment of people with mental illness, Judi Chamberlin (1997) includes the availability of a range of options as an element in the decision-making process. Choices should be meaningful and desirable to clients (Ferleger 1994; Harp 1994; Sundram 1994; Hagner and Marrone 1995). Carling (1995) identifies the requirements that make choices meaningful. These include having real options and knowing about them, knowing one’s own preferences, having the ability to make trade-offs,


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and having access to supports. It is noted, too, that choices are often limited, resulting from an underfunded and poorly integrated mental health system (Ferleger 1994; Surles 1994). Others emphasize that in addition to choices, people with mental illness need information in order to make informed choices (Fisher 1994; Means and Smith 1994; Sundram 1994; Hagner and Marrone 1995; Chamberlin 1997). Means and Smith (1994) note that information “must be presented clearly, attractively and in good time” (p. 95). Supportive Organizational Culture Handler (1990) notes that a supportive environment is essential for meaningful client participation in decision making. This includes, among other things, an environment that provides resources to clients and staff, the development of professional norms that support shared decision making, and employment of staff who believe in shared decision making. The development of an organizational culture supportive of shared decision making is critical to empowering people with severe mental illness (Guiterrez, GlenMaye, and DeLois 1995; Vandergang 1996). Organizations with such a culture typically view client participation as a right (Katan and Prager 1986). By contrast, many mental health organizations hold philosophies and have cultures that do not support shared decision making (Guiterrez, GlenMaye, and DeLois 1995); thus, organizations must be willing to change themselves in order to create opportunities for participation (Constantino and Nelson 1995). The success of these change efforts ultimately depends on the extent to which those in power value client input, are willing to share power, and provide the resources to support shared decision making (Carling 1995). Strong administrative leadership is required for mental health organizations to change the culture to one that embraces client participation (Guiterrez, GlenMaye, and DeLois 1995). The selection of program models that support shared decision making facilitates such a culture, especially psychiatric rehabilitation (Cook and Hoffschmidt 1993; Pratt et al. 1999) and recovery models (Fisher 1994; Young and Ensing 1999; Jacobson and Greenley 2001). Staff and clients must receive training in these models and in how to engage in collaborative decision making (Smith and Ford 1986; Constantino and Nelson 1995; Guiterrez, GlenMaye, and DeLois 1995). In fact, Vandergang (1996) argues that training in shared decision making should be given not only to clients but also to clinical staff, administrators, and board members. One of the greatest barriers to shared decision making in mental health organizations is the adoption of the medical model as the primary service model. Bassman (1997) believes that a narrow application of the medical model is unlikely to value client participation in decision making. The medical model focuses on the biological basis of mental illness



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and the treatment of symptoms; the mental health professional is viewed as the expert who determines the appropriate treatment. Many mental health professionals in a variety of contexts continue to exclude people with mental illness from decision making based on a view of themselves as experts and clients as lacking the capacity to make a meaningful contribution to decision making (Barnes and Wistow 1994; Salzer 1997; Kumar 2000). A summary of the seven conditions for empowering people with severe mental illness follows: Conditions Internal to Clients Controlled symptoms: Clients are sufficiently free of psychiatric symptoms to engage in the decision-making process for the issue under consideration. Decision-making skills: Clients possess the decision-making skills required to participate in the decision being considered. Conditions External to Clients Access to resources: Clients have access to resources, including groups that provide emotional support for participation, advocates who facilitate communication between clients and staff, and logistical resources, such as transportation, child care, and meals; staff may also need resources, particularly the time to meaningfully engage clients in decision making. Reciprocal concrete incentives: Concrete incentives exist for both clients and staff to participate together in the decision-making process. Decision-making structures and processes: Structures and processes exist through which clients can participate in each decisional area. Availability of choices: Clients have meaningful choices and sufficient information about those choices to make informed decisions. Supportive organizational culture: The organization has a culture that supports shared decision making.

Application of the Conditions for Empowerment We now apply the seven conditions for empowerment to an analysis of decision making at the previously described public psychiatric hospital. We separately consider client participation in decision making, in treatment planning, in the residential unit, in organizational decision making, and in mental health policy making. For each decisional area, we describe the degree of empowerment that actually occurred and explain clients’ level of involvement in decision making by applying the con-


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ditions for empowerment. Based on this analysis, we offer suggestions for increasing client involvement. Treatment Planning Degree of empowerment.—We find substantial evidence that some clients actively participate in planning their treatment (Linhorst et al. 2002). However, this occurs to a much greater degree in the cottage program than in the hospital programs. Clients and staff of the cottage program indicate that clients are typically present with the case manager when the treatment plan is developed. The two parties actively engage in a dialogue over components of the plans, and clients can negotiate with case managers when differences of opinion arise. Clients and staff did identify one cottage, however, in which clients do not participate in this manner. In that cottage, the case manager typically writes the treatment plan without the client present, and clients of the cottage perceive that they have little room for negotiation when it is presented to them. Clients and staff from the cottage program also indicate that clients have some options for treatment activities. Once again, one cottage was an outlier, with clients from the cottage indicating that they have no choice of treatment activities. In contrast to the cottage programs, clients and staff in the hospital programs indicate that the treatment team typically selects treatment goals and activities without clients in attendance. Staff subsequently explain the completed treatment plan to clients. Staff of the hospital programs indicate that clients can generally negotiate with the treatment team over components of the plan with which they disagree. Many clients, however, say they are pressured to sign their treatment plan, even if they disagree with portions of it. Their perception differs from those of the staff, who say that they negotiate in good faith. Staff and clients of the hospital programs indicate that clients have few if any alternatives for treatment activities, with the exception of a limited number of options for leisure activities. Clients from one hospital program indicate that they have no treatment options, including leisure activities. Application of conditions.—Several conditions for empowerment are present in the cottage program, and these promote greater participation in treatment planning than is found in the hospital programs. First, the cottage program has a structure and process that encourages collaborative treatment planning between the case managers and clients. The cottage program approaches psychiatric rehabilitation by calling for clients to participate actively in treatment planning and by outlining a specific process whereby this should occur. Program staff receive extensive training and consultation in the use of this model from the Boston Center for Psychiatric Rehabilitation, one of the recognized national leaders in the field. In contrast, hospital programs use a medical model



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of treatment planning that does not seek direct client input in the selection of treatment goals and activities. In addition, cottage program clients have less serious internal barriers to empowerment. They are more likely to have their psychiatric symptoms controlled to a degree. In fact, one of the requirements for admission to the cottage program is that clients’ symptoms be controlled enough for them to actively participate in treatment planning. While cottage program clients’ symptoms periodically intensify, overall, they are much more likely than hospital program clients to be psychiatrically stable enough to participate in treatment planning. Both clients and staff from all three hospital programs indicate that the severity of mental illness prevents some clients from participating. Symptoms include thought disorders, an inability to concentrate, and personality disorders. Other symptoms prevent some clients from setting realistic goals, processing information about treatment options, and making meaningful choices about activities. Cottage clients are more likely to have decision-making skills specific to treatment planning. On entering the cottage programs, clients participate in a “rehab readiness” treatment module that explains the treatment planning process and prepares clients to participate. While all three hospital programs focus on improving clients’ decision-making skills in a manner consistent with the respective program models, none of the programs have modules targeted to treatment planning. Limited treatment choices reduce the level of empowerment for all clients, especially those in the hospital programs. The range of treatment activities is limited by the presence of mandatory core treatments in the hospital and cottage programs that reduce the number of choices for clients. Limited staff size is an additional constraint on client choice, hinging participation on whether staff are available to escort clients to and from activities. Client choice is also limited when treatment activities are not offered enough or when they are offered at times that prevent some clients from participating. Further, Missouri law limits the choices of NGRI clients in treatment planning by placing the release authority with the courts, rather than with clients or facility staff, by establishing the criteria for release, and by limiting the ability of NGRI clients to participate in activities in the community while residing at the facility. But cottage clients have some additional choices that depend on their future plans, such as whether they plan to work after discharge. Reciprocal concrete incentives for mutual participation are largely absent from the hospital program. Consistent with a medical model, some hospital staff perceive limited value in engaging clients in collaborative discussions of treatment goals and activities, although not all hospital staff hold this view. Hospital staff have no other incentives to involve clients, and there are no negative sanctions for failing to do so. Some clients, too, apparently see little value in participation. Clients


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and staff both describe this in various ways, such as clients being apathetic or unmotivated to participate. Several clients also openly state that they do not see the value of treatment planning and do not wish to participate in that process as it is currently understood. In contrast, cottage staff are much more likely to verbalize their belief that clients need to actively engage in the treatment planning process for treatment to be successful. That belief is consistent with the training they receive. However, this belief apparently is not held by all staff, as exemplified by the case manager of the one cottage in which clients do not participate in treatment planning. Cottage program staff have more resources than hospital program staff. Treatment planning is one of the major functions of cottage case managers, who indicate that they generally have sufficient time to engage clients. In contrast, hospital staff overwhelmingly state that it would take considerably longer to write treatment plans with clients present and that they do not have the necessary time because of numerous other duties. Also, one important client resource, an advocate, is largely absent from the facility. Advocates could promote participation in treatment planning, especially for hospital program clients who have more severe symptoms and less developed decision-making skills. A limited number of clients occasionally have advocates from a statewide advocacy organization. The advocates typically are present when an NGRI client wants to contest the treatment team’s decision not to plan for the client’s release in the near future. However, the advocate’s presence is more adversarial than facilitative, and their value to increasing client empowerment is questionable. In the advocate’s presence, the treatment team clarifies the reasons for not supporting the release, but the treatment plan itself is not changed, and new patterns of communication between the client and treatment team are not established for future treatment planning sessions. Administrators have attempted to develop an organizational culture that supports client participation in treatment planning. For example, vision and value statements for DMH and the facility include client participation in treatment planning. One DMH value is “All people can easily access . . . services of their choice.” Another states “All people design their own services and supports.” The facility vision statement is “Rehabilitation through choices: people with mental illness will make meaningful choices about how they socialize, live, learn, and work.” The standards of the JCAHO also support client participation: “Patients are involved in all aspects of their care” ( Joint Commission on the Accreditation of Healthcare Organizations 1998). This involvement includes, but is not limited to, giving informed consent, making care decisions, and resolving dilemmas about care decisions. The facility’s principles of psychiatric rehabilitation also support client involvement in treatment planning. As we have presented, however, these efforts did not result



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in a facility-wide cultural and behavioral change sufficient to ensure that all facility clients actively participate in treatment planning. A cultural change did occur over time in the cottage program. This change was reinforced by extensive staff training. Increasing client empowerment.—Application of the conditions for empowerment suggests ways of increasing clients’ participation in treatment planning, particularly in the hospital programs. The structure and process for treatment planning must become one inclusive of clients. Staff also need to evaluate the psychiatric symptoms of each individual client, determining his or her ability to participate in the treatment planning process when the plan is written. Staff duties should also be restructured or additional personnel should be added to ensure that staff have adequate time to engage clients. Clients also need specific skill training in treatment planning. Because of their general level of impairment, most clients in the hospital programs can benefit from having advocates at treatment planning meetings who facilitate communication between clients and staff. Choices in treatment goals and activities must also increase if the process is to be meaningful. Finally, staff and clients need an incentive to participate together. Participation might be achieved if staff are educated about the benefits of client participation and if planning activities are monitored, with the imposition of negative sanctions, as necessary. One would expect that clients would choose to participate over time if staff meaningfully engage them. Empowerment of clients in the cottage program could be enhanced through the provision of additional treatment options, closer monitoring of staff to ensure that they are meaningfully engaging clients, and the selective use of advocates for particular clients or with particular staff. Residential Setting Degree of empowerment.—We consider three aspects of decision making related to the residential setting. We first consider client involvement in selecting where they live within the facility. Clients and staff agree that clients have little or no choice about where they live within the facility. This includes their initial placement on entering the facility, as well as subsequent transfers to different residential units. The second aspect is client participation in decision making about daily activities within their wards or cottages. In both wards and cottages, the level of client participation varies considerably among residential units. Most clients indicate that they choose which clothing to wear each day, with some clients saying that clients and staff choose them together. Clients in the hospital programs, who eat all meals in the cafeteria, indicate that they choose from a variety of food items. They say that the dietary department frequently surveys them about food options and attempts


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to meet their preferences. Clients in the cottage program eat the majority of their meals in the cottages. Clients in at least half of the cottages say that staff, not clients, order and prepare the food that they eat in the cottage, although they express interest in doing more of this themselves. Clients from about one-third of the focus groups say that clients choose the television programs they watch, with staff monitoring their appropriateness. Other clients indicate that staff typically choose the television programs based on staff, not client, preferences. As a final example, most clients indicate that they make decisions about how their rooms are decorated. Clients perceive that they have less input into how the cottage or ward is decorated. Clients in wards are more likely to participate in decorating the common area than are those in cottages, because ward decoration is often done as a social activity in which clients and staff work together. The third residential aspect is clients’ involvement in resolving differences that arise between clients or between clients and staff. All wards and cottages have at least weekly meetings of all clients and some staff. Some units use these meetings as a forum to discuss differences, while in other units, staff use these meetings solely for informational purposes. As an alternative to residential meetings for dispute resolution, some clients work with treatment teams in the hospital programs and with case managers in the cottage program, although this, too, was highly variable. As a last resort, still other clients file official grievances with the facility superintendent. Such actions take the issue outside of the cottage or ward. Applications of conditions.—Several factors greatly limit the availability of choices in where clients can live within the facility. Since the treatment programs are residentially based, clients’ clinical symptoms and treatment needs determine their treatment program and consequently the range of residential units in which they can live. Also, the facility is typically at or near maximum census, so new clients are assigned to any available beds within the appropriate program. Maintaining safe gender ratios limits choice, too. In addition, the programs’ level systems and DMH’s risk management policies determine when clients can move to a less restrictive residential unit. Clients’ requests for transfer to another ward or cottage within the same program are seldom granted. Some staff believe it is therapeutic for clients to work out any differences that they have with staff or clients in their current units. Also, a considerable amount of paperwork is required of the new and old case managers when clients move to a new cottage. The variation in client input into residential functions and resolution of differences is due in large part to a lack of structures and processes for decision making. Facility and program policies do not identify those areas of residential life in which clients should be involved in decision making or how decisions should be made, so each residential unit de-



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velops its own guidelines, structures, and processes. Client involvement is also limited by the fact that some staff do not perceive the existence of incentives to accomplish this goal. It appears that when clients are not involved in decision making, staff make decisions for their own convenience or from an authoritarian standpoint. Other staff apparently see participation as a form of treatment and as a method of skill building. Finally, clients lack information about options for completing residential functions and for resolving disputes. They are unaware that practices vary across residential units. As a result, they do not pursue alternate ways of doing things. Increasing client empowerment.—It is doubtful that the facility can grant clients a greater degree of choice in the selection of their residential unit because of the factors previously discussed. A shortage of available beds and assignments based on security risk are particularly acute considerations. It is possible, however, that additional residential choices could be granted within programs. Clients may have very legitimate reasons for requesting transfers within programs, such as having a friend or good working relationship with a staff member from another unit. It is a challenge to create concrete incentives for staff to engage clients in a discussion over transfer requests, particularly when such transfers typically result in more paperwork for staff. The application of conditions also suggests two changes that could improve client participation in residential functions and the resolution of differences. First, clients and staff need to identify those areas in which clients should participate in decision making, creating structures and processes for decision making that are specific to each of those areas. Second, clients need information about the choices available to them within the ward or cottage, such as room decoration, meal planning, and dispute resolution. Without this information, many clients will have difficulty envisioning a greater decision-making role. Organizational Decision Making Degree of empowerment.—We found substantial evidence that clients have meaningful participation in organizational decision making (Linhorst, Eckert, and Hamilton, in press). Client participation tends to be associated with decisions that improve the day-to-day lives of clients, rather than major policy decisions. Examples of changes that clients initiate, or over which they have substantial influence, include an increase in the client spending budget, an extension of curfew time for evening grounds privileges, the construction of a roof over the pavilion in the interior courtyard of the facility, the purchase of patio furniture for the cottages, an increase in the diversity of pastoral services offered to clients, an increase in visiting hours, an increase in the choice of personal care products available to clients, and an increase in client access to


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medical records. In addition, clients assist in the review and writing of policies that affect them. These revisions tend to make the policies more consistent with actual practice, to simplify procedures outlined in them, and to be more clearly written in concise language. Applications of conditions.—Clients are able to meaningfully participate in organizational decision making largely because they have two main structures for doing so. Client participation occurs primarily through the facility’s consumer council. The consumer council is composed of up to 12 current clients, including representatives from the facility’s four programs (Linhorst et al. 2001). According to the by-laws, the council’s stated purpose is to give clients a more active role in decision making. The consumer council is aided by a staff member from the facility’s quality management department, who has a reputation as a strong client advocate. The consumer council was created in 1995 and has grown steadily in its acceptance by staff and clients. It is now a formal part of the decision-making structure. The consumer council reports to the facility’s rights and ethics committee, which is chaired by the same person who serves as the staff liaison to the consumer council. The rights and ethics committee represents the consumer council’s interests to the facility’s executive committee. The facility superintendent also attends the consumer council meetings at least quarterly to discuss concerns of either party. In addition, the consumer council has a role in the facility’s formal policy review process, examining all policies that affect clients. While the executive committee has final decisionmaking authority on policies, it typically incorporates the suggestions made by the consumer council. The facility’s performance improvement system is a second means by which clients participate in organizational decision making (Linhorst and Eckert 2002). This system uses the principles of total quality management to identify and correct problems that cut across departments or programs. Performance improvement teams are integral to this system. These are short-term work groups established to address a particular problem. Chairs of these teams have increasingly asked clients to participate when they address problems that directly affect clients. The meaningful participation of clients is promoted through skill training for group decision-making settings, particularly the consumer council and performance improvement teams. Clients also have access to several resources. The consumer council serves as a social movement group for client participation in organizational decision making. It provides emotional support to clients, as well as a forum to collectively identify problems and consider alternative solutions. This client group receives assistance from an advocate who has been crucial to its success. Also, reciprocal concrete incentives appear to be present. Over time, the executive committee and the rights and ethics committee have come to value the contributions that the consumer council makes to the daily



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lives of clients. This sense of value is still evolving with staff because of the large number who may be asked to serve on a team, although staff who chair such teams typically support client participation and meaningfully involve them. Particularly after some initial successes in achieving change, a core group of clients are invested in the process and seek opportunities for participation. While the facility has made steady progress toward meaningfully involving clients in organizational decision making, there are still unaddressed factors that limit broader client participation. The severity of symptoms prevents some clients from participating. In addition, some clients lack the skills or confidence to work with staff on improvement issues. Others fear retribution from staff for voicing negative opinions, although this fear significantly decreases as more clients have positive experiences. Also, many clients lack general information about facility policies, options under debate, and means of participation. Similarly, clients lack information about the structures through which they can participate in organizational decision making. When asked to identify how they can influence facility policies, only about half of the clients refer to the consumer council, and most have never participated on a performance improvement team. Finally, facility administrators, and thus clients, have no choices on some important policies that affect clients. Such policies are instead set at the DMH central office, or by the Missouri legislature. Increasing client empowerment.—New structures and processes are needed that allow more clients to get information on facility issues, to examine alternatives, to share their views with their representatives from the consumer council or performance improvement teams, and to publicize clients’ accomplishments. Since the study ended, the facility has taken steps to increase information to clients. The facility funds a client worker position to write a regular consumer council newsletter, which is an important source of information for both clients and staff. The facility superintendent now holds quarterly open meetings to which all but the highest-risk clients are invited. Clients also now attend the superintendent’s semiannual open meetings with staff. Still, there remains a need for a forum in which greater numbers of clients can discuss issues. One way of organizing this would be to hold periodic discussions with clients in each ward or cottage. These could be led by a consumer council member, the staff liaison to the consumer council, or an informed staff member. Mental Health Policy Making Degree of empowerment.—We find no evidence that clients participate in making the mental health policies that are set by the DMH central office, by the state, and by federal law.


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Applications of conditions.—Clients lack involvement in mental health policy making largely because they do not have a structure or process for sharing their views with policy makers and mental health advocacy groups. We identify seven mental health advocacy organizations that serve the geographic area of the facility. According to staff, clients, and a review of documents, four of the seven organizations have no contact with facility clients. The remaining three have intermittent contact, but they focus on advocacy at the individual client level, rather than on broader policy issues. As such, facility clients have no mechanism to become engaged in the policy-making process. Even if a structure or process existed for participation, we assume that there would be other unmet conditions. These include severity of psychiatric symptoms and poor decision-making skills, as well as lack of information about the political process, the issues being debated, and policy options. Finally, leaders of mental health advocacy organizations appear to lack concrete incentives to involve these hospitalized clients, even though they routinely work with mentally ill people who reside in the community. This advocacy includes a variety of activities, such as letter writing, sharing their stories about the benefits of treatment, and attending mental health lobby days at the state capital. Increasing client empowerment.—First and foremost, structures and processes are needed for clients to engage in mental health policy making. This could be accomplished by establishing connections with existing mental health advocacy groups. In addition, clients would need a variety of resources, including the assignment of an advocate, emotional support for their endeavors, training on the legislative process, and instruction on methods of advocacy. It may be difficult to create concrete incentives for mental health advocates and policy makers that will include clients hospitalized in long-term facilities, but one could argue that they cannot completely fulfill their advocacy missions and policymaking functions without getting information from those who are directly affected by mental health services and policies.

Creating Conditions for Empowerment Mental health clinicians, administrators, and policy makers all play important roles in creating the conditions for empowering people with severe mental illness. Clinicians help to establish the conditions internal to clients by treating mental illness and teaching decision-making skills. Clinicians can also play a role in developing decision-making structures that support shared decision making for the issue at hand. For example, some clients may need an advocate present at treatment planning meetings, while other clients may benefit from completing the treatment plan with one trusted staff member, rather than with the whole team. Clinicians can also create structures and processes for making decisions



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on residential units. Some decisions may best be made with all clients of the residential unit, while other decisions may be more appropriate for smaller initial work groups. Next, clinicians can support empowerment by actively creating choices for clients and by providing information about those choices. Clinicians need to make a conscious effort to do this whenever they interact with clients in decision-making situations, including treatment planning, residential unit decisions, and participation with clients on committees or performance improvement teams. Finally, clinicians may serve as a resource to clients by being an advocate for individuals or client groups in interactions with other staff, by emotionally supporting their involvement in decision making, and by locating other resources needed for participation in decision making, such as transportation or child care for people with mental illness who reside in the community. Mental health administrators also make a significant contribution to creating conditions for empowerment. Probably the most important role for administrators is to create an organizational culture that supports shared decision making. This often begins with agency mission, vision, and value statements that include the value of client participation in decision making. It also requires substantial action to support these written statements. This value is manifest in the deliberate hiring of staff who believe in shared decision making. Another indication is the commitment of client resources, such as allocating funds for a client advocate position, creating support groups for clients, and providing staff resources. Resources for staff might include extensive training in the value and methods of shared decision making, as well as adequate time to engage clients in shared decision making. The creation of such an organizational culture also includes adopting treatment and rehabilitation models that incorporate shared decision making at their foundations, such as psychiatric rehabilitation or the recovery model. Such models may, however, need to be modified or combined with other approaches to best serve a given problem or population. It also includes deliberately creating choices for clients whenever possible. Administrators have a responsibility to ensure that structures and processes are created and properly implemented for all important decision-making areas. In addition, administrators have a responsibility to model shared decision making. If they do not meaningfully involve clients in decision making, line staff are unlikely to do so. Finally, state and federal legislators, state departments of mental health, and mental health policy advocates play a substantial role in developing conditions for empowerment. Policy advocates and state departments of mental health need to create structures and processes for shared decision making in the development of programs, policies, priorities, and advocacy strategies. These structures and processes should extend to people with mental illness in a wide range of settings, in-


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cluding those who reside independently in the community, live in boarding and nursing homes, are hospitalized in long-term facilities, are incarcerated, and are homeless. Telling their stories and expressing their needs can empower them. This can also be important to the development of policy and programs that are responsive to clients’ needs. Incorporation of such diverse populations, of course, is no small task. Organizations will continually need to create new ways of involving clients. The National Alliance for the Mentally Ill (NAMI) exemplified this when it recently created a consumer council to its national organization. The national organization is encouraging chapters to do the same in order to increase client participation throughout the organization (National Alliance for the Mentally Ill 2002). State departments of mental health can also facilitate empowerment by adopting treatment models for statewide implementation that support shared decision making, as did Missouri. State mental health departments might also require that contract service providers and state institutions develop shared decision-making structures. They can help to create incentives for providers that are designed to involve clients by allowing the billing of staff time when involved with clients in shared decision making and by reimbursing clients’ expenses for participation, such as travel, meal, and child-care costs. Legislators can create similar incentives for staff and clients to participate in shared decision making. They might also require client participation in statewide service planning. The other important role for legislators is to provide clients with choices by creating and funding a range of psychiatric and rehabilitation services and programs. Since many people with mental illness are poor, legislators also encourage choice by funding income support programs that apply to all people. A summary of the roles of mental health clinicians, administrators, and policy makers in creating the conditions for empowerment follows. Mental Health Clinicians Treat clients’ mental illness Provide clients with decision-making skills Create structures and processes for decision making that are specific to the issue being discussed and to the abilities of clients Create choices for clients whenever possible and provide them with the information to make informed choices Serve as advocates for clients to facilitate shared communication with others Provide clients with the emotional support that they often need to participate in decision making Mental Health Administrators Create an organizational culture supportive of shared decision



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making Include client participation in decision making in mission, vision, or value statements Hire staff supportive of shared decision making Fund client advocate positions Provide clients with the logistical resources needed for participation, such as transportation, child care, and meals Provide training to staff on the importance of shared decision making and the skills needed to meaningfully involve clients in decision making Ensure that staff have the time to engage clients in shared decision making Adopt treatment and rehabilitation models that support shared decision making Ensure that shared decision-making structures and processes are created and properly implemented Involve clients in organizational decision making to model shared decision making for the rest of the staff Mental Health Policy Makers and Advocates Create structures and processes for shared decision making in new program and policy development, in prioritizing needs, and in developing legislative advocacy strategies Ensure that structures and processes are inclusive of a wide range of people with mental illness, including those who are homeless, hospitalized, and incarcerated Create incentives for shared decision making by reimbursing staff for time engaged with clients in decision making Require client participation in statewide service planning Create choices for clients by adequately funding a wide range of services to meet their diverse treatment, social, and economic needs

Conclusion Handler (1990) acknowledges that most human services do not possess the ideologies, traditions, and practices that support client empowerment through participation in decision making. Yet, he believes that such participation is possible. In his own research, and in the work of others, he finds that meaningful examples of participation in decision making are occurring at varying degrees in diverse settings with powerless populations. The conditions that we identify for empowering people with severe mental illness should be useful to mental health organizations and policy makers wishing to increase client participation in


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decision making. They provide direction for analyzing current decisionmaking systems and for addressing identified shortcomings. The empowerment of clients through participation in decision making can lead to substantial benefits, both for people with mental illness and for the organizations that work with them.

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Note The authors wish to thank Gary Hamilton, Ph.D., for his thoughtful contributions to the manuscript, and the Emmett J. and Mary Martha Doerr Center for Social Justice Education and Research in the School of Social Service at Saint Louis University for its support of this research.
