The organization that we know today as NAMI California is the result of the efforts of a few courageous parent leaders, many families and thousands of individuals; friends and professionals that worked hard in the 1970’s and 1980’s to give birth to an organization that would completely change the way we view mental illness. During that time families dreamed of the day when a child with schizophrenia would be treated no differently than a child with another chronic illness like leukemia or mental retardation. They hoped for a time when mental illness could be discussed openly and their ill children and family members could be properly cared for in their own communities. We take this for granted today. Accomplishing these simple goals, however, would not be easy.
It all began at a meeting of 9 Northern California parent groups in Oakland, California on October 22 in 1977. The meeting was organized by three parents: Tony Hoffman, Fran Hoffman and Eve Oliphant. These three founded and led the organization from the late 70s into the 1980’s. They were joined by many other parent-leaders, families, consumers and supporters over the years. C. Allen Braswell, Helen and Hank Teisher, Olga Leifert and Peggy and Don Richardson are just a few of the many parents that provided critical leadership and support in the beginning. Together, they started an organization that turned into a national movement to inform and educate the country about mental illness and advocate for the rights and care of mentally ill family members. It is an organization that has changed the way we think about, treat and care for mental illness forever. The following describes the founding of the organization and the family movement it helped to create.
In The Beginning
During the 1970’s and before, serious mental illness, particularly schizophrenia, was viewed with considerable ignorance, shame and guilt by the public and even those who suffered quietly from its effects. Parents and family were often viewed as the cause of their child’s illness rather than its solution. Professional psychiatrists and psychologists had primary responsibility for diagnosis and treatment. Parents and families had little say in the care and treatment of their family member. Individuals with serious mental illness were generally locked away in dilapidated and deteriorating institutions for months and years on end. The advent of new drugs in the 1950’s and 1960’s made it possible for the first time in history for seriously mentally ill individuals to function on their own in the society. These new medications provided an essential ingredient for a new approach to serious mental illness in California that would emphasize community based care.
New Federal and State legislation provided the additional ingredients. In 1963, Congress expanded the Aid to the Disabled act to include mental illness and passed the Mental Retardation Facilities Construction/Community Mental Health Center Act. The first, now called SSI, provided direct financial support to mentally ill individuals in the community. The second provided initial funding for building community based mental health centers. The fourth and final ingredient was the passage of the Lanterman-Petris-Short (LPS) act in 1967 by the California State legislature. The LPS act ended the inappropriate, indefinite and involuntary commitment of mentally disordered persons to institutions and encouraged the full use of existing agencies, personnel and funds to provide treatment, supervision and placement of gravely disabled persons. The authors of the LPS act envisioned an expanded system of community based mental health centers providing appropriate and timely support to those in need at a reduced cost to the State.
The LPS act was fully implemented into law in 1969. The release of thousands of individuals into the community from the State’s asylums and institutions began in 1970 and continued throughout the decade. One example vividly illustrates what it was like and what would happen in communities, large and small, across the State. Over 3800 mentally ill people were released from Agnews State Hospital on June 30, 1972 into the San Jose area. This resulted in the creation of a “mental health ghetto” overnight as various service providers converted vacant buildings and abandoned fraternity houses into board and care homes. Between 1969 and 1970, California counties would be required to provide mental health services to over 45,000 inpatients and 120,000 outpatients. While the authors of the legislation thought they were improving lives, what they actually did was release thousands of ill, confused and vulnerable individuals into communities that were simply unprepared to provide the services and support envisioned.
While LPS did reduce the cost of caring for the mentally ill to the State, it did not improve lives or lessen the stigma that the public associated with mental illness. Quite the opposite occurred. Communities that previously had little contact with mentally ill individuals were seeing them daily on their streets. Individuals with schizophrenia that were previously locked away in the back rooms of State asylums now found themselves in the back rooms of run down boarding houses. Parents and family that previously had limited contact and responsibility for their mentally ill son, daughter, parent or relative, were now facing difficult choices regarding their care and support on a daily basis. Job and housing discrimination towards mentally ill individuals was widespread. Opportunities were few. Many would end up living homeless on the street or worse. Even the community mental health professionals that supported LPS legislation would find that they had neither the time and resources or inclination to provide the care originally envisioned. Private insurance was not available or coverage was limited. Parents and families were on their own. They would have to learn to cope with the changing needs of their mentally ill family member without the community support originally planned and promised.
Other legislation passed during the Johnson administration and afterward would give parents and families of seriously mentally ill individuals the tools to start a second movement on behalf of their mentally ill family members. In 1964, Congress passed the Civil Rights Act outlawing racial discrimination in public places. This act was expanded in 1968 to include housing protections for people with disabilities and families with children. At this time, thousands of disabled soldiers were returning home from the Vietnam War. They were demanding an end to the war and access to government services and support. Parents of handicapped children began to demand access as well. In 1975, Congress passed the Education for All Handicapped Children Act, mandating free and appropriate public education for children with disabilities including mainstreaming where possible. The new support for physically disabled individuals did not go unnoticed by the parents with seriously mentally ill children. While public support and funding for the care of physically handicapped individuals grew during the 1970’s, support and funding for those that were disabled as a result of serious mental illness declined.