Overview of Consumer and Family Movements

Since the late 1970s, mental health services continue to be transformed by the growing influence of consumer and family organizations (Lefley, 1996). Through strong advocacy, consumer and family organizations have gained a voice in legislation and policy for mental health service delivery. Organizations representing consumers and family members, though divergent in their historical origins and philosophy, have developed some important, overlapping goals: overcoming stigma and preventing discrimination, promoting self-help groups, and promoting recovery from mental illness (Frese, 1998).

This section covers the history, goals, and impact of consumer and family organizations, whereas the next section covers the process of recovery from mental illness. With literally hundreds of grassroots consumer organizations across the United States, no single organization speaks for all consumers or all families. In fact, even the term “consumer” is not uniformly accepted. Despite the heterogeneity, these organizations typically offer some combination of advocacy and self-help groups (Lefley, 1996).

Many users of mental health services refer to themselves as “consumers.” The lexicon is complicated by objections to the term “consumer.” To some, being a consumer erroneously signifies that service users have the power to choose services most suitable to their needs. Those who object contend that consumers have neither choices, leverage, nor power to select services. Instead, some consumers refer to themselves as “survivors” or “ex-patients” to denote that they have survived what they experienced as oppression by the mental health system (Chamberlin & Rogers, 1990). This distinction can best be understood in its historical context.

Origins and Goals of Consumer Groups

The consumer movement arose as a protest in the 1970s by former patients of mental hospitals. Their antecedents trace back to the 19th century, when a handful of individuals recovered enough to write exposés expressing their outrage at the indignities and abuses inside mental hospitals. The most persuasive former patient was Clifford Beers, whose classic book, A Mind That Found Itself (1908), galvanized the mental hygiene reform movement (Grob, 1994). Beers was among the founders of the National Committee on Mental Hygiene, an advocacy group that later was renamed the National Mental Health Association. This group focuses on linking citizens and mental health professionals in broad-based prevention of mental illness.

With the advent of deinstitutionalization in the 1950s, increasing numbers of former patients of mental hospitals began to forge informal ties in the community. By the 1960s, the civil rights movement inspired former patients to become better organized into what was then coined the mental patients’ liberation movement (Chamberlin, 1995). Groups of patients saw themselves as having been rejected by society and robbed of power and control over their lives. To surmount what they saw as persecution, they began to advocate for self-determination and basic rights (Chamberlin, 1990; Frese & Davis, 1997). The posture of these early groups was decidedly militant against psychiatry, against laws favoring involuntary commitment, and often against interventions such as electroconvulsive therapy and antipsychotic medications (Lefley, 1996; Frese, 1998). Groups called Alliance for the Liberation of Mental Patients, the Insane Liberation Front, and Project Release met in homes and churches, drawing their membership from those with firsthand experiences with the mental health system. Largely unfunded, they sustained their membership by providing peer support, education about services in the community, and advocacy to help members access services and to press for reforms (Furlong-Norman, 1988).

The book On Our Own (1978) by former patient Judi Chamberlin was a benchmark in the history of the consumer movement. Consumers and others were able to read in the mainstream press what it was like to have experienced the mental health system. For many consumers, reading this book was the beginning of their involvement in consumer organizations (Van Tosh & del Vecchio, in press). Early consumer groups, although geographically dispersed, voluntary, and independent, were linked through the newsletter Madness Network News, which continued publication from 1972 to 1986. During the same era, the Conference on Human Rights and Against Psychiatric Oppression was established and met annually from 1973 through 1985 (Chamberlin, 1990). In 1978, early consumer groups gained what they perceived as their first official acknowledgment from the highest levels of government. The President’s Commission on Mental Health stated that “. . . groups composed of individuals with mental or emotional problems are being formed all over the United States” (President’s Commission on Mental Health, 1978, pp. 14–15). To date, racial and ethnic minority group members are underrepresented within the consumer movement proportionate to their growing representation in the U.S. population. There is a need for more outreach and involvement of consumers representing the special concerns of racial and ethnic minorities.

The advocacy positions of consumers have dealt with the role of involuntary treatment, self-managed care, the role of consumers in research, the delivery of services, and access to mental health services. By 1985, consumer views became so divergent that two groups emerged: The National Association of Mental Patients²⁷ and the National Mental Health Consumers’ Association. The former opposed all forms of involuntary treatment, supported the prohibition of electroconvulsive therapy, and rejected psychotropic medications and hospitalization. The latter organization held more moderate views for improving rather than eschewing the mental health service system (Lefley, 1996; Frese, 1998). Both groups eventually disbanded, but the differences of opinion that they reflected became deeply entrenched.

Self-Help Groups

Self-help refers to groups led by peers to promote mutual support, education, and growth (Lefley, 1996). Self-help is predicated on the belief that individuals who share the same health problem can help themselves and each other to cope with their condition. The self-help approach enjoys a long history, most notably with the formation of Alcoholics Anonymous in 1935 (IOM, 1990). Over time, the self-help approach has been brought to virtually every conceivable health condition.

Since the 1970s, many mental health consumer groups emphasized self-help as well as advocacy (Chamberlin, 1995), although to different degrees. Self-help for recovering mental patients initially emphasized no involvement with mental health professionals. Over time the numbers and types of self-help groups began to flourish and more moderate viewpoints became represented. Self-help groups assume three different postures toward health professionals: the separatist model, the supportive model that allows professionals to aid in auxiliary roles, and partnership models in which professionals act as leaders alongside patients (Chamberlin, 1978; Emerick, 1990). The focus of groups varies, with some groups united on the basis of diagnosis, such as Schizophrenics Anonymous and the National Depressive and Manic-Depressive Association, whereas others are more broad based.

Chamberlin’s influential book and another book by former patients, Reaching Across (Zinman et al., 1987), explained to consumers how to form self-help groups. These books also extended the concept of self-help more broadly into the provision of consumer-run services as alternatives (as opposed to adjuncts) to mental health treatment (Lefley, 1996).

Programs entirely run by consumers include drop-in centers, case management programs, outreach programs, businesses, employment and housing programs, and crisis services (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 consumers to obtain social support and assistance with problems. Although research is limited, the efficacy of consumer-run services is discussed in Chapter 4.

Consumer positions also are being incorporated into more conventional mental health services—as job coaches and case manager extenders, among others. The rationale for employing consumers in service delivery—in consumer-run or conventional programs—is to benefit those hired and those served. Consumers who are hired obtain employment, enhance self-esteem, gain work experience and skills, and sensitize other service providers to the needs of people with mental disorders. Consumers who are served may be more receptive to care and have role models engaged in their care (Mowbray et al., 1996).

Accomplishments of Consumer Organizations

Consumer organizations have had measurable impact on mental health services, legislation, and research. One of their greatest contributions has been the organization and proliferation of self-help groups and their impact on the lives of thousands of consumers of mental health services. In 1993, a collaborative survey found that 46 state mental health departments funded 567 self-help groups and agencies for persons with mental disabilities and their family members (National Association of State Mental Health Program Directors, 1993). A nationwide directory lists all 50 states and the District of Columbia as having 235 different mental health consumer organizations (South Carolina SHARE, 1995).

On a systems level, the consumer movement has substantially influenced mental health policy to tailor services to consumer needs. This influence is described by consumers and researchers as “empowerment.” A concept from the social sciences, empowerment has come to be defined by mental health researchers as “gaining control over one’s life in influencing the organizational and societal structures in which one lives” (Segal et al., 1995).

Consumers are now involved in all aspects of the planning, delivery, and evaluation of mental health services, and in the protection of individual rights. One prominent example is the passage of Public Law 102-321, which established mental health planning councils in every state. Planning councils are required to have membership from consumers and families. Having a planning council so constituted is required for the receipt of Federal block grant funds for mental health services. Other Federal legislation required the establishment of protection and advocacy agencies for patients’ rights in every state (Chamberlin & Rogers, 1990; Lefley, 1996).

Another significant development has been the establishment of offices of consumer affairs in many state mental health authorities. Offices of consumer affairs are generally staffed by consumers to support consumer empowerment and self-help in their particular states. A recent survey of state mental health authorities identified 27 states as having paid positions for consumers in central offices (Geller et al., 1998). In 1995, the Federal Center for Mental Health Services hired its first consumer affairs specialist.

The consumer movement also has had a substantial influence on increasing the utilization of consumers as employees in the traditional mental health system, as well as in other human service agencies (Specht, 1988; U.S. Department of Education, 1990; Schlageter, 1990; Interagency Council on the Homeless, 1991). Consumers are being hired at all levels in the mental health system, ranging from case manager aides to management positions in national advocacy organizations, as well as state and Federal governmental agencies.

Finally, consumers continue to be involved in research in several ways: as participants of clinical research; as respondents who are asked questions about conditions in their life; as partners in some aspect of the planning, designing, and conducting of the research project with professional researchers in control; and as independent researchers who conduct, analyze the data, and publish the results of the research project (Campbell et al., 1993). The past decade has witnessed the blossoming of a vibrant consumer research agenda and the growing belief that consumer involvement in research and evaluation holds great promise for system reform, quality improvement, and outcome measurement (Campbell et al., 1993; Campbell, 1997). In an effort to enhance the active role of consumers and others in the research process, the National Institute of Mental Health is developing a systematic means of including public participants in the initial review of grant applications in the areas of clinical treatment and services research. This innovation follows up on a recommendation made by the Institute of Medicine and Committee for the Study of the Future of Public Health (1988).

Family Advocacy

The family movement has experienced spectacular growth and influence since its beginnings in the late 1970s (Lefley, 1996). Although several advocacy and professional organizations speak to the needs of families, the family movement is principally represented by three large organizations. They are the National Alliance for the Mentally Ill (NAMI), the Federation of Families for Children’s Mental Health (FFCMH), and the National Mental Health Association (NMHA). NAMI serves families of adults with chronic mental illness, whereas the Federation serves children and youth with emotional, behavioral, or mental disorders. NMHA serves a broad base of family members and other supporters of children and adults with mental disorders and mental health problems. Though the target populations are different, these organizations are similar in their devotion to advocacy, family support, research, and public awareness.

Fragmentation and lack of availability of services were motivating forces behind the establishment of the family movement. Deinstitutionalization, in particular, was a cogent impetus for the formation of NAMI. Deinstitutionalization of the mentally ill left families in the unexpected position of having to assume care for their adult children, a role for which they were ill prepared. Another motivating force behind the family movement was the past tendency by the mental health establishment to blame parents for the mental illness in children (Frese, 1998). The cause of schizophrenia, for example, had been attributed to the “schizophrenogenic mother,” who was cold and aloof, according to a reigning but now discredited view of etiology. Similarly, parents were viewed as partly to blame for children with serious emotional or behavioral disturbances (Melaville & Asayesh 1993; Friesen & Stephens, 1998).

NAMI was created as a grassroots organization in 1979 by a small cadre of families in Madison, Wisconsin. Since then, its membership has skyrocketed to 208,000 in all 50 states (NAMI, 1999). NAMI’s principal goal is to advocate for improved services for persons with severe and persistent mental illness—for example, schizophrenia and bipolar disorder. Its sole emphasis on the most severely affected consumers distinguishes it from most other consumer and family organizations. Another NAMI goal is to transform public attitudes and reduce stigma by emphasizing the biological basis of serious mental disorders, as opposed to poor parenting (Frese, 1998; NAMI, 1999). Correspondingly, NAMI advocates for intensification of research in the neurosciences. Through state and local affiliates, NAMI operates a network of family groups for self-help and education purposes.

NAMI’s accomplishments are formidable. The organization has become a powerful voice for the expansion of community-based services to fulfill the vision of the community support reform movement. NAMI has successfully pressed for Federal legislation for family membership in state mental health planning boards. It is a prime force behind congressional legislation for parity in the financing of mental health services. It also has made substantial inroads in the training of mental health professionals to sensitize them to the predicament of the chronically mentally ill. It has promoted “psychoeducation,” specific information to family members, usually in small-group settings, about schizophrenia and about strategies for dealing with relatives with schizophrenia (Lamb, 1994). Finally, NAMI has successfully lobbied for increased Federal research funding, and it has set up private research foundations (Lefley, 1996).

Similarly, advocacy by parents on behalf of children with serious emotional or behavioral disturbances has had a compelling impact. Advocacy for children was electrified by the publication of Jane Knitzer’s 1982 book, Unclaimed Children; shortly afterward, the National Mental Health Association (NMHA) issued Invisible Children (NMHA, 1983), followed by A Guide for Advocates to All Systems Failure (NMHA, 1993). Knitzer chronicled the plight of families in trying to access care from disparate and uncoordinated public agencies, many of which blamed or ignored parents. NMHA, a pioneer in the mental health advocacy field, assumed a pivotal role in strengthening the child mental health movement in the 1980s and early 1990s. Over time, the Federation of Families for Children’s Mental Health has become another focal point for families, championing family participation and support in systems of care and access to services. The Federation’s chapters across the United States offer self-help, education, and networking (FFCMH, 1999). Through the efforts of these groups and individuals, among the most noteworthy accomplishments of the family movement has been the emergence of family participation in decisionmaking about care for children, one of the decisive historical shifts in service delivery in the past 20 years.