Tonja Rogers, 25, has been an outcast for most of her life.
At 3 weeks old, her tiny body was ravaged by a rare genetic disease, herpes encephalitis, which left her severely retarded, blind and prone to violent fits.
Her parents, Larry and Sherry Rogers, didn't know it at the time, but Tonja's problems would alienate her not just from the outside world, but also from facilities that traditionally care for the developmentally disabled or the blind.
"Nobody in this world wants to care for severely retarded, totally blind, extremely active kids," Sherry Rogers said.
The Reseda-based Therapeutic Living Centers for the Blind, now approaching its 25th year and poised to break ground next month on a unique senior care facility, does. It has become a haven for dozens of patients like Tonja, who have nowhere else to go.
Therapeutic Living Centers is one of only two facilities in Los Angeles County specifically equipped to deal with both blindness and developmental disability in adults, officials said. The other, the Center for Living Independence for the Multi-Handicapped Blind, is located in Sierra Madre.
Of the 8,000 developmentally disabled residents of the San Fernando, Santa Clarita and Antelope valleys, about 350 are severely visually impaired, officials said.
Little Steps, Major Breakthroughs
At Therapeutic Living Centers, the accomplishment of even the simplest daily tasks is cause for celebration. A recent afternoon found Tonja's roommate, Lindsey Foy, 23, slumped over on the kitchen table, her neck unnaturally craned upward as she stared sightlessly into space. She weakly clasped a plastic toy in front of her. Just behind her, Tonja swung wildly back and forth in a harness built especially for her. The swing is used to reward her for good behavior.
A worker took Lindsey's hands and wrapped them around a glass of water set in front of her, as Tonja continued to swing, emitting a series of yelps. After 10 minutes, with excruciating slowness, Lindsey finally put the glass to her lips and took a sip.
"Little steps . . . are major breakthroughs for us," said Ford Neale, executive director of Therapeutic Living Centers.
Residents must overcome not only their cognitive deficits but also their inability to learn tasks simply by observing them, as those with development lags frequently do.
Therapists must break down the specific task, like drinking from a glass or brushing teeth, into multiple steps, then physically guide residents through the steps until they have been conditioned to do them on their own.
It is an extraordinarily tedious process, therapists say, but all part of the center's daily mission. "We're here not to make a profit but to change some lives," Neale said.
Each success lends a measure of dignity to lives that are decidedly undignified by traditional standards.
The residents suffer from a range of conditions, including cerebral palsy, Down's syndrome and autism. Many were so-called oxygen-tent babies, whose brains were damaged by super-oxygenated air pumped into their incubators; others were exposed to rubella in the womb. Still others were stricken later in life, by diseases such as meningitis.
Centers for Disabled Often Lack Facilities for Blind
Parents of children with developmental disabilities typically have several options, including live-in centers run by the state and special-education schools, some of which house students. Most of these facilities, however, lack staffers trained to deal with the additional burden of visual impairment.
"You name 'em, they've got an organization for them," said Bernice Pearlman, one of the Reseda center's founding parents. "You add blindness to it, and you have no place."
Schools for the blind are similarly limited. The Foundation for the Junior Blind, in Los Angeles, is one of only a handful of such schools across the country that has even a small residential program for mentally retarded children. But once they reach the age of 21, they are forced to graduate, often to uncertain futures.
"Most of these kids are so disabled that they don't go home," said Nancy Swanson, director of the program. "The only place they have to go is an adult facility, but it's so difficult to find places that are sensitive to the visual impairment and the disability."
In 1975, a group of parents unwilling to pack their kids off to state institutions banded together to form Therapeutic Living Centers.
The residential and educational facility opened its doors in 1977 to its first 10 residents--all blind and with multiple disabilities. Since then, the center has expanded to house 60 patients in 11 residential homes, while maintaining a resident-to-staff ratio of 2 or 3 to 1
Four of the center's homes are clustered on its Lindley Avenue main campus, which features a pool, classrooms and offices for administrative and medical staff. The other homes are scattered around the San Fernando Valley.
The waiting list varies according to the requirements of prospective residents, Neale said. Some get in immediately, while others have to wait years.
Residents' care is paid for mostly by Medi-Cal. The center also receives funding from various state agencies, private foundations and individual donors.
In addition to homes, the center operates a day program with participants from both its residential population and other developmental homes in the area.
Tonja Rogers of Fremont went through two state hospitals and a community board-and-care facility in Northern California before arriving at the Reseda center three years ago.
"We went through a nightmare with physical abuse, sexual abuse and inappropriate programming," said Sherry Rogers.
The Rogerses waited eight years after first hearing of Therapeutic Living Centers for a spot to open for their daughter. Still, they said, it was worth the wait.
Parents Call Center a 'Gift From God'
Since her arrival, Tonja's behavioral problems have decreased from 19 to one: She still puts random objects in her mouth.
Therapists devised a three-dimensional object board that allows Tonja, who cannot speak, to communicate on a limited basis for the first time. In addition, they have used a system of tactile prompts and physical guiding to teach Tonja simple tasks, such as feeding and dressing herself.
"It was the first time in Tonja's life that we had seen quality care," her mother said.
The Rogerses are not alone. The center boasts dozens of satisfied parents who describe it as nothing less than a "gift from God."
"They recognize that there's more to these clients than most people realize, that they can have a full life," said Ronni Foy, Lindsey's mother.
Now, Therapeutic Living Centers staffers are trying to ensure that their residents can live out their days at the facility.
For the first time, a handful of members of the center's population, including several original residents, are encountering aging issues. The center is having to deal with its own aging-baby-boomer phenomenon, Neale said.
Developmentally disabled people often experience the onset of dementia and other age-related problems as early as their 40s or 50s, he said.
Workers from other homes have traditionally turned aging residents over to nursing-care facilities for the nondevelopmentally disabled or returned them to state hospitals.
Plans Call For Seniors Program
The Reseda center plans a $2.25-million building, adjacent to its current site, that will house a day program especially for seniors. Workers are also beginning to educate themselves on the requirements of long-term elderly residential care.
Heading the list of potential beneficiaries is Daryl Doolen, 60, the center's oldest resident. Daryl, who lives next door to his sweetheart, Debbie Baird, 46, has shown signs of needing to "retire," Neale said.
The tall gangling resident, who also suffers from a genetic disease that leaves him vulnerable to serious heart problems, has begun to withdraw from activities and slow down.
But he continues to go to church and on arranged "dates" with Debbie every week, said Neale, who affectionately calls all the residents by their first names.
The new facility would allow Daryl and Debbie and others to live out their golden years together. Said Neale: "We want to be able to keep people in the family."