Mental Health: A Report by the Surgeon General

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.

²⁷ Later renamed the National Association of Psychiatric Survivors (Chamberlin, 1995).

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