When Angelina Viramontes' 6-year-old daughter, Ariadna, contracted encephalitis, Viramontes moved into Childrens Hospital and did not return home to her husband and four other children for the 10 months Ariadna remained hospitalized.
After doctors told her that Ariadna had suffered brain damage and might remain "a vegetable" the rest of her life, she took the spasmodic, drooling child home in a wheelchair and single-mindedly devoted herself to teaching her to eat, talk and walk again, the mother said.
Over the ensuing months, to the surprise of physicians, the child recovered control over most of her faculties. But when Viramontes tried to send Ariadna back to school, she discovered that her battle to rehabilitate her daughter had just begun.
A hefty woman with little formal education, but with a commanding presence, Viramontes set out to gain the best available services for her daughter. The decision set Viramontes--a Spanish-speaking homemaker who seldom left her home, did not drive a car and had had no dealings with government agencies--on a course that for more than a decade led her through a bureaucratic maze of agencies serving the mentally retarded.
The trail led from downtown offices to the waiting rooms of state officials in Sacramento, and back to her neighborhood, where she became a leader among Latinos in South-Central Los Angeles and adjoining communities who were seeking similar services for their handicapped children. The area, officials said, has the highest estimated concentration of developmentally disabled people in California.
Progress Prevents Aid
Ariadna was initially denied services by the South-Central Regional Center for the developmentally disabled, one of 21 nonprofit, government-funded corporations throughout California that supervise services for the mentally retarded and those with such disabilities as epilepsy and cerebral palsy. Viramontes was told that Ariadna did not qualify because she had almost completely recovered from her illness.
But Viramontes would not take no for an answer. She told anyone who would listen that "by investing in my child's future now, they would save the expense of having to support her for the rest of her life," she recalled.
A few years later, in 1977, Ariadna was accepted as a regional center client and provided services that included placement in a series of expensive private schools for the handicapped.
The combined efforts of Viramontes and the agency paid off: Ariadna, now 18, will graduate this summer with her class from Jordan High School in Watts.
But Viramontes' work continues.
Recalling the frustration of trying to communicate with an English-speaking bureaucracy that made few provisions for the rapidly growing number of Spanish-speaking residents in the center's service area, Viramontes worked to organize Rehabilitacion Latina Unida (United Latino Rehabilitation), a group of parents of developmentally disabled children aimed at providing mutual aid, as well as lobbying for services.
"They simply didn't provide the services that people in the area needed," Viramontes said. "When Spanish-speaking parents called the center, there was no one they could communicate with. When social workers came to the house, the parents often didn't know who they were or why they had come. So they wouldn't open the door.
Social Workers Helped
"We needed help, so a few of us started getting together," she recalled. The fledgling group was assisted by Latino social workers at the center who helped set up meetings to inform the parents on topics ranging from medical and therapy services to Social Security and immigration problems.
The regional center system, which came into existence as a result of legislation in 1971 that made the state responsible for the care of the developmentally disabled, has generally encouraged the participation of its clients' parents, who by state mandate must be included on the centers' boards of directors. The South-Central center serves 10 communities from Maywood to Carson, in addition to South-Central Los Angeles.
Government Was Feared
Because many Latinos in the area are recent immigrants to the United States, are poor and unfamiliar with--if not fearful of--government agencies, the parents' organizing effort has been fraught with difficulties, Viramontes said.
Nevertheless, the organization counts the more than 1,000 Latino families served by the center among its members. Viramontes also has been instrumental in organizing a statewide council of Latino parents' groups that lobby for their children.
Today, Viramontes and three other Latino parents sit on the South-Central Regional Center's 17-member board of directors, the policy-setting body that oversees operation of the agency and its $18-million annual budget. Interpreters attend all board meetings, which are now conducted in both Spanish and English.