Comprehensive care for adults with severe and persistent mental disorders also includes ancillary services to deal with such social consequences as family disruption and loss of employment and housing. Ancillary services are those above and beyond symptom management and rehabilitation. They include consumer self-help and advocacy, consumer-operated programs, family self-help and advocacy, and human services. The chapter concludes with a brief review of evidence about integrating the mental health service system and the human services system of which it is part.
A driving force for many of these services is to redress the stigma associated with severe and persistent mental illness. Stereotypes and ignorance are omnipresent (Robert Wood Johnson Foundation, 1990; Wahl et al., 1995). They lead many people to avoid living, socializing, or working with, renting to, or employing people with severe mental disorders (Levey et al., 1995). Stigma reduces consumers access to resources and opportunities (e.g., housing, jobs), fuels isolation and hopelessness, and leads to outright discrimination and abuse. Thus, overcoming stigma represents yet another challenge of coping with severe and persistent mental illness and of working toward recovery (Wahl & Harman, 1989; Reidy, 1993).
Self-help groups are geared for mutual support, information, and growth. Self-help is based on the premise that people with a shared condition who come together can help themselves and each other to cope, with the two-way interaction of giving and receiving help considered advantageous. Self-help groups are peer led rather than professionally led.
Organized self-help has a long history, with an estimated 2 to 3 percent of the general population involved in some self-help group at any one time (Borkman, 1991, 1997). Over the past several decades, people with serious mental illnesses have formed mutual assistance organizations to aid each other and to combat stigma. These range from small groups held in a members home to freestanding nonprofit organizations with paid staff and a range of programs. In general, however, the self-help empowerment trend does not appear to have reached the African-American, Native American, Hispanic/Latino, and Asian-American populations.
As the number and variety of self-help groups has grown, so too has social science research on their benefits (Borkman, 1991). In general, participation in self-help groups has been found to lessen feelings of isolation, increase practical knowledge, and sustain coping efforts (Powell, 1994; Kurtz, 1997). Similarly, for people with schizophrenia or other mental illnesses, participation in self-help groups increases knowledge and enhances coping (Borkman, 1997; Trainor et al., 1997). Various orientations include replacing self-defeating thoughts and actions with wellness-promoting activities (Murray, 1996), improved vocational involvement (Kaufmann, 1995), social support and shared problem solving (Mowbray & Tan, 1993), and crisis respite (Mead, 1997). Such orientations are thought to contribute greatly to increased coping, empowerment, and realistic hope for the future. Additionally, some groups are tailored to meet the needs of consumers who are members of sexual minority groups, men, or those who also have substance disorders (Noordsy et al., 1996; Vogel et al., 1998).
A number of controlled studies have demonstrated benefits for consumers participating in self-help. One study of the self-help group Recovery, Inc., found that leaders and members who were surveyed retrospectively reported fewer symptoms and fewer hospitalizations after joining the group than before. It also found the leaders reports of their psychological well-being to have been comparable to community controls (Galanter, 1988). In another study of 115 former mental patients, Luke (1989) found that those who continued to attend self-help meetings at least once per month over a period of 10 months were more likely to show improvement on psychological, interpersonal, or community adjustment measures than those who attended less frequently. Through a case study, which included focus groups and interviews, Lieberman and colleagues (1991) found a consumer-run support group to improve members self-confidence and self-esteem and to lead to fewer hospitalizations.
In a survey of mental health self-help group leaders in New York State, respondents identified three positive outcomes that were directly related to their self-help group membership: greater self-esteem, more hopefulness about the future, and a greater sense of well-being. According to survey respondents, all of these positive changes led to fewer hospitalizations (Carpinello & Knight, 1993). A study of six self-help programs in several parts of the United States also reported on consumers perceptions of self-help programs (Chamberlin & Rogers, 1990). Although not nationally representative, consumers in this study expressed satisfaction with their self-help program, at which they spent an average of 15 hours per week. They reported that their participation helped them to solve problems and feel more in control of their lives.
Propelled by the growing consumer movement, consumer self-help extends beyond self-help groups. It also encompasses consumer-operated programs, such as drop-in centers, case management programs, outreach programs, businesses, employment and housing programs, and crisis services, among others (Long & Van Tosh, 1988; National Resource Center on Homelessness and Mental Illness, 1989; Van Tosh & del Vecchio, in press). Drop-in centers are places for obtaining social support and assistance with problems, without professionals in attendance. The rationale for consumer roles in service delivery is that consumer staff, clients, and the mental health system can benefit. Consumer staff are thought to gain meaningful work, to serve as role models for clients, and to enhance the sensitivity of the service system to the needs of people with mental disorders. Clients are thought to gain from being served by staff who are more empathic and more capable of engaging them in mental health services (Mowbray et al., 1996).
An appreciation for the potential value of peer support stimulated the Community Support Program of the National Institute of Mental Health to fund local consumer-operated Services Demonstration Projects from 1988 to 1991. These demonstration projects also resulted in the increasing involvement of mental health consumers in the development and provision of peer support, involvement in traditional service roles, evaluation of services, and advocacy. A variety of consumer-operated programs were developed, staffed, and evaluated as states began to fund locally based initiatives (Nikkel et al., 1992; Kaufmann et al., 1993; Mowbray & Tan, 1993). Most evaluations of drop-in centers were in the form of process evaluations that generally found consumers to be satisfied or that programs met their objectives (Kaufmann et al., 1993; Mowbray & Tan, 1993). In 1998, the Federal Center for Mental Health Services initiated a multisite evaluation study of consumer-operated services across the United States.
In addition to ongoing evaluations, there are several published studies of client outcomes with consumer-run programs, although the research base is modest. Several studies, noted earlier, found improved outcomes with consumer self-help programs. Another study evaluated a consumer-run case management program. It compared the effectiveness of a case management program staffed by consumers with a similar program staffed by nonconsumers. Case managers in both programs, which were part of assertive community treatment, performed brokering, assistance, and support functions, rather than clinical management and treatment. The randomized trial found that clients assigned to either case management program fared equally well in clinical, social, and quality of life outcomes (Solomon & Draine, 1995). Recently, peer specialists were added to the recommended staffing for assertive community treatment teams; peer specialists provide expertise and consultation to the entire treatment team (Allness & Knoedler, 1999).
Consumers also may be employed as staff in more traditional mental health services operated by nonconsumer professionals. Consumer positions most commonly include peer counselors, peer job coaches, case managers, staff for drop-in centers, outreach workers, and housing assistants. In a survey of 400 agencies offering supported housing to people with severe mental illness, 38 percent employed mental health consumers as paid staff (Besio & Mahler, 1993). As noted previously, consumers in the role of peer-specialists integrated into case management teams led to improved patient outcomes (Felton et al., 1995).
The mental health field has witnessed great changes in policy development, with consumers playing increasingly visible roles in advocacy. Consumer contribution to policy was initially encouraged by Federal laws mandating consumer participation in planning, oversight, and advocacy activities at the state level (Chamberlin & Rogers, 1990; Van Tosh & del Vecchio, in press). With the establishment of state mental health planning councils and local mental health advisory boards and committees, consumers increasingly have become equal partners in a process often reserved for seasoned policymakers. In addition, consumers have become active participants in the process to reform health and mental health care financing. For example, the Managed Care Consortium was formed in 1995 to create educational opportunities for a host of advocacy organizations across the United States. With funding support from the federal Center for Mental Health Services, this consortium encouraged teams to form in each state to influence the design of managed care programs. Consumers also have entered the halls of many public sector bureaucracies, serving in leadership roles in Offices of Consumer Affairs and interfacing with other government departments. In what was once believed to be the last bastion for consumer integration, consumers are now seen as critical stakeholders and valued resources in the policy process.
Consumers also have become advocates in the communities where they live and work. Advocacy enables consumer groups to shape policy at the local level, where a direct impact can be felt. At the local level, advocacy strives to improve access to, or quality of, needed services and to counter employment and housing discrimination. It can also be helpful in mobilizing resources to build and sustain programs. The National Mental Health Association (NMHA, available at http://www.nmha.org), comprising more than 340 affiliates nationwide, works with and supports the efforts of consumers to achieve advocacy goals.
Family members of people with severe mental illnesses also encounter ignorance and stigma. Stigma translates into avoiding or blaming family members (Phelan et al., 1998; Wahl & Harman, 1989). Families also are under a great deal of stress associated with care giving and obtaining resources for their mentally ill members.
Familiesespecially parents, siblings, adult children, and spousesoften provide housing, food, transportation, encouragement, and practical assistance. At the same time, schizophrenia and other mental disorders strain family ties. Symptoms of mental disorders may be disruptive and troubling, especially when they flare up. Even when there are no problems, living together can be stressfulinterpersonally, socially, and economically. Parents and their adult children often perceive mental disorders and treatment differently, sometimes disagreeing about the best course of action.
Consequently, families too have created support organizations. Some of these are professionally based and facilitated, often as part of a clinic or other treatment program. Others are peer run in the self-help model. Similar to self-help among people with mental illnesses, family self-help can range from small supportive groups to large organizations. The National Alliance for the Mentally Ill (NAMI) is the largest such organization. Starting in 1979 in Wisconsin, NAMI now has 208,000 members nationally. It has more than 1,200 local self-help groups (affiliates) across all 50 states (see http://www.nami.org). While still growing, its members include only a small percentage of the family members of people with mental illnesses in the country (Monking, 1994; Heller et al., 1997a).
Family members primarily attend self-help and support groups to receive emotional support and accurate information about mental illness and mental health services (Heller et al., 1997a, 1997b). Participation often leads to better quality of life for the attending family members and also indirectly benefits the member diagnosed as mentally ill (Wahl & Harman, 1989; Monking, 1994). Family self-help groups can result in better communication and interaction among family members (Heller et al., 1997b).
In addition to providing each other with mutual support, families often devote time, energy, and resources for advocacy to improve services and opportunities for their family members with mental disorders. Similar to consumer advocacy, family advocacy on a local level might include organizing to improve local mental health services, or to redress grievances with service providers. On the national level, consumer groups work to influence legislation and to support research and education initiatives (Wahl & Harman, 1989). Through their advocacy, families have been quite effective in raising their concerns and perspectives to service providers, legislators, and the public.
The clinical symptoms of schizophrenia and other mental disorders are often disruptive and distressing. Their consequences are no less severetruncated education, unemployment, social isolation, and exclusion from community participation. Facing multiple life stressors, all severe, with a minimum of resources, people with severe mental illnesses often need a variety of supportive services. Paramount among these are housing, employment and income assistance, and health benefits. Consumers have reported their major needs to include adequate income, meaningful employment, decent and affordable housing, quality health care, and education to increase skills (Ball & Havassy, 1984; Rosnow & Rucker, 1985; Lynch & Kruzich, 1986).
The actual proportion of people with severe mental illnesses who lack affordable and decent housing has not been assessed directly. Yet indirect assessments point to a serious problem. In 1994, the U.S. Department of Housing and Urban Development (HUD) reported that almost half of all very low-income disabled residentsincluding persons with serious mental illnesshave worst case needs for housing assistance. Furthermore, it was reported that the majority of these persons often live in the most severely inadequate housing (U.S. Department of Housing and Urban Development, 1994; U.S. Department of Education, 1998). It is estimated that up to one in three individuals who experience homelessness has a mental illness (Federal Interagency Task Force on Homelessness and Mental Illness, 1992).
The housing preferences of people with schizophrenia and other serious mental disorders are clear: these individuals strongly desire their own decent living quarters where they have control over who lives with them and how decisions are made (Owen et al., 1996; Schutt & Goldfinger, 1996; Sohng, 1996). In an analysis of 26 consumer preference surveys, Tanzman (1993) found that at least 59 percent of those surveyed wanted independent living in a house or apartment. They also preferred to live alone (or with a spouse or partner), yet not with other people with mental disorders. Most also preferred access to mental health and rehabilitation services to support them where they were living.
When deinstitutionalization led to the need for more community housing, the residential programs that were developed replicated institutional programs (Carling, 1989). Although residential programs varied in the degree of oversight and services, they generally proved to be ineffective in meeting consumers needs. Moreover, living in such programs added to stigma. Because of these shortfalls, greater emphasis has been placed on conventional housing supplemented by appropriate assistance tailored to individual need (Srebnik et al., 1995). This new concept, called supported housing, moves away from placing clients, grouping clients by disability, staff monopolizing decisionmaking, and use of transitional settings and standardized levels of service (Carling, 1989; Lehman & Newman, 1996). Instead, supported housing focuses on consumers having a permanent home that is integrated socially, is self-chosen, and encourages empowerment and skills development. The services and supports offered are individualized, flexible, and responsive to changing consumer needs. Thus, instead of fitting a person into a housing program slot, consumers choose their housing, where they receive support services. The level of support is expected to fluctuate over time. With residents living in conventional housing, some of the stigma attached to group homes and residential treatment programs is avoided.
Although there are no randomized clinical trials to support the effectiveness of the supported housing approach, consumer advocacy and changes in clinical practice affirm the shift to supported housing. In a quasi-experimental study, an evaluation of the Robert Wood Johnson Foundation Program on Chronic Mental Illness demonstrated the feasibility and modest benefits of the supported housing approach using rental subsidies from HUD (Newman et al., 1994). Consumers experienced better mental health and more self-determination when they lived in adequate housing (Nelson et al., 1998). For example, one study found that personal empowerment and functioning were enhanced, and hospitalization reduced, after 5 months in a supported housing program (McCarthy & Nelson, 1991). Also, resident control over decisions was directly related to satisfaction and empowerment (Seilheimer & Doyal, 1996). Similarly, another study found that having greater choice in housing was associated with greater happiness and life satisfaction (Srebnik et al., 1995).
Despite these findings, serious housing problems persist for people with schizophrenia and other mental disorders. Most such individuals are poor and thereby face very limited housing options.
Income, Education, and Employment
Conversely, adequate standards of living and employment are associated with better clinical outcomes and quality of life (Cohen, 1993; Bell & Lysaker, 1997). In a randomized trial of consumers assigned to paid versus unpaid work, paid employment was found to reduce symptoms of schizophrenia (Bell et al., 1996). Moreover, employer accommodations for those with psychiatric disabilities appear to be inexpensive. The most frequently requested accommodations focus on orientation and training of supervisors, provision of onsite support, and adaptive work schedules. Such accommodations rarely result in significant cost to the employer (Mancuso, 1990; Fabian et al., 1993).
While newer vocational rehabilitation and employment initiatives strive to remedy persistently high levels of unemployment, most consumers find themselves unable to work consistently or at all. This is due not only to active symptoms but also to profound interruptions of education and employment caused by symptom onset and exacerbations, stigma and discrimination, lack of higher education programs for this population, and low-paying menial jobs.
When the onset of mental health problems begins during school-age years, educational systems are often ill prepared. Several studies have identified educational deficits in their clientele, who function in reading and math at a level far below their achieved grades in school (Cook et al., 1987; Cook & Solomon, 1993). Supported education models can provide assistance to consumers with their education (Cook & Solomon, 1993; Hoffman & Mastrianni, 1993; Ryglewicz & Glynn, 1993). One example is Consumers and Alliances United for Supported Education, a consumer-operated program in Quincy, Massachusetts, that provides a wide range of services to encourage individuals with psychiatric disabilities to enter or reenter college or technical school programs. Services include academic and career counseling, assistance with finding financial aid, study skills, stress control, tutoring/coaching, and assistance with crisis while hospitalized (CMHS, 1996).
Consumers lack control over their financial affairs when benefit checks are given directly to care providers for the persons housing and other expenses, or to a legally appointed representative payee (if the person has been deemed unable to manage his/her own finances) (Conrad et al., 1998). Those consumers who manage their own finances usually face such modest monthly budgets that there is no room for error. Funds frequently are depleted before the end of the month. Furthermore, disability payments are sometimes reduced or discontinued when a recipient is working. Since employment is rarely consistent, they need to resume disability benefits. Yet, once they are canceled, government disability benefits can be cumbersome to restart. The Social Security Administration has developed new measures to facilitate reactivation of benefits for individuals who return to work, but they are not yet widely disseminated. In some ways the requirements of Social Security disability benefits and other such programs often act as disincentives to the pursuit of employment (Polak & Warner, 1996; Priebe et al., 1998).
Some people with serious mental illnesses have adequate income or financial assistance (Ware & Goldfinger, 1997). Some have affluent families who can subsidize their expenses. Others collect pensions because they were not disabled by their illness until after they had a substantial work history. Finally, some have found well-paying positions through a formal rehabilitation program, a community-based educational or vocational training program, or a supportive employer.
Integrating the range of services needed by individuals with severe and persistent mental disorders has been a vexing problem for decades. The General Accounting Office (1977) criticized the Federal community mental health centers for their failure to meet the multiple needs of individuals with chronic mental illness. The Federal response was to establish a Community Support Program to provide resources and technical assistance to communities to help them in formulating community support systems to integrate the various services provided by fragmented human services agencies (Turner & TenHoor, 1978; Tessler & Goldman, 1982). The limitations of a community support program in dealing with severe and persistent mental illness in major cities, particularly those with high rates of homelessness, prompted the Robert Wood Johnson Foundation to partner with HUD to create the Program on Chronic Mental Illness (Aiken et al., 1986). This program promoted the concept of local mental health authorities as the agencies responsible for integrating all services for individuals with chronic mental illness, including housing opportunities (Shore & Cohen, 1990, 1994). The Robert Wood Johnson Foundation Program on Chronic Mental Illness was initiated in late 1986 and evaluated over a 6-year period (Goldman et al., 1990a, 1990b, 1994a, 1994b).
The evaluation determined that local mental health authorities were established or strengthened in almost all of the nine cities, resulting in measurable increases in organizational centralization and reduced fragmentation of services (Morrissey et al., 1994). Case management services also were expanded, producing greater continuity of care and reductions in family burden (Lehman et al., 1994; Shern et al., 1994; Tessler et al., 1994). Client outcomes, including social functioning and quality of life measures, improved during the demonstration (Lehman et al., 1994; Shern et al., 1994). Yet the time course of most clients improvement did not coincide with improvements in system integration. This suggested that their improvement could not be attributed to system integration. For a subset of clients, improved client outcomes were due to the benefits of special combined housing and support services. Yet, even for this subset, improvements were related, but not directly attributable, to systems integration (Newman et al., 1994).
Evaluators concluded that system integration and traditional case management alone probably were not sufficient to produce optimal social and clinical outcomes (Goldman et al., 1994b; Lehman et al., 1994). They speculated that the availability of rental subsidies and supports or more intensive and higher quality case management servicessuch as those offered in assertive community treatmentwere essential (Ridgely et al., 1996). This set of findings, coincident with the release of the report of the Federal Interagency Task Force on Homelessness and Mental Illness (1992), Outcasts on Main Street, prompted the development of another demonstration program.
Access to Community Care and Effective Services and Supports was launched by the Federal Center for Mental Health Services in 1993 (Randolph et al., 1997). Still in the midst of its evaluation, preliminary findings sustain the benefits of providing assertive community treatment to obtain good clinical and social outcomes. They support the association of better system integration with higher rates of moving individuals with severe mental illness from homelessness into independent housing (Rosenheck et al., 1998a). It remains to be seen, however, whether the improvements in system integration observed over time are associated with improvements in consumers clinical and social outcomes.
Integrating service systems remains a challenge to mental health and related human service agencies. Its benefits for accountability and centralization of authority have been established. Its impact on individuals with severe and persistent mental illness may be limited by the lack of available high-quality services and mainstream welfare resources, reflecting the gap between what can be done and what is available (Goldman, 1998a).