In California, as in other states, large institutions dominated
the service system for people with developmental disabilities
through the first half of the 20th century. Public-funded
community services were limited, and out-of-home care in large
public and private institutions was typically the only service
option available.
The growth of large institutions actually increased across the
United States between the 1920’s and 1940’s as a result of
social, political and economic views and policies of the time, in
particular the eugenics movement. Eugenicists promoted the
idea that the world’s social problems could be eliminated by
using selective breeding to remove “undesirable genes” from the
human gene pool. To accomplish this, eugenicists
recommended that people they considered to be “unfit”, including
those with mental and developmental disabilities, be sterilized
or segregated from the rest of society in order to deny them the
ability to reproduce.
Many health-care professionals and public-policy makers in the
United States were influenced by and supported these ideas.
Even after the concepts of eugenics fell into disrepute following
World War II, they continued to impact public policies and the
lives of people with disabilities for another twenty years
through the ongoing practice of involuntary sterilization, and
the use of institutionalization as a means of isolating people
with disabilities.
In the 1950’s, families of children with mental retardation began
to organize and create their own community support and service
systems as an alternative in institutional care. Parent-run
organizations such as Aid for Retarded Citizens in San Francisco
and Exceptional Children’s Foundation in Los Angeles, established
private schools, activity centers and sheltered workshops for
their sons and daughters with mental retardation who were denied
access to public education and vocational services.
In the early 1960’s, the civil rights movement and the election
of President John F. Kennedy (who had a sister with mental
retardation) helped to speed the change process. As mental
retardation became a part of the national agenda, federal dollars
were directed toward ways to provide community services for
people with mental retardation.
In 1964, there were over 13,000 people with developmental
disabilities residing in four overcrowded institutions in
California (called state hospitals), and another 3,000 on waiting
lists. At the urging of parents, the California Legislature
appointed a subcommittee to investigate concerns about the care
provided in state hospitals and to review the need to build
additional institutions. The investigation revealed
serious problems with the existing state hospitals and that
building additional large institutions would be very costly.
This prompted the Legislature to seek an alternative. In
1966, funds were appropriated to establish two pilot regional
centers, one in northern and one in southern California.
The primary focus of the centers was to provide community-based
services to support individuals who were in danger of being
placed in state hospitals. Assemblyman Frank D. Lanterman
co-authored the legislation for the pilot project. During
their first year of operation, the pilot centers served 559
persons.
These first two regional centers were so successful, that the
Legislature set out to design a statewide system. In 1969,
the Lanterman Mental Retardation Act established the regional
center system, which today includes twenty-one regional centers
throughout California.
In 1973, the Lanterman Mental Retardation Act was expanded to
include people with cerebral palsy, epilepsy and autism, and
other conditions closely related to mental retardation. In
1976, the legislation was renamed the Lanterman Developmental
Disabilities Services Act (a.k.a the Lanterman Act) and amended
to establish the right to treatment and habilitation services and
individualized program planning. In 2014, the law changed
“mental retardation” to intellectual disability.
By the mid-1980’s, the availability of community-based services
was not only helping people to successfully live in their home
communities, but also assisting hundreds of individuals to move
out of state hospitals (renamed state developmental centers in
1978). In 1985, there were only 7,100 people residing in
state developmental centers, while over 78,000 individuals were
receiving community-based services through the regional center
system.
In 1992, Senate Bill 1383 updated the philosophy of the Lanterman
Act and expanded the range of available services and
supports. The new philosophy embraced the concept of
“empowerment”, establishing person-centered planning and giving
individuals and their families more choice and authority to make
decisions about their own lives.
By the turn of the century, a major shift in California’s
developmental services system was evident. In 2001, only
3,800 people were still residing in state developmental centers,
while over 163,000 individuals and families were receiving
community-based services.
Today, the service system continues to focus on providing
services and supports through community-based providers and
continues the goal of reducing the number of people residing in
state developmental centers; as of February 2015 only 1,147
people were still residing in state developmental centers and
about 287,000 individuals and families were receiving
community-based services coordinated through the regional center
system envisioned by Assemblyman Frank Lanterman.
Transparency