Outside/Inside Moves Adults Into Real World

When Antoinette Villereal, 21, entered the Outside/Inside Community a little more than six months ago, she was too shy to speak. Now, Villereal is a leader, helping those around her accomplish many tasks--like identifying coins, counting and singing in a talent show--that previously were hard but are now starting to come easy.

The Outside/Inside Community, a new program for severely retarded adults sponsored by the Exceptional Children’s Foundation, began the weekday classes in daily living at the facility’s new building on Venice Boulevard last March. The foundation began in 1946 as an educational institution for mentally retarded children, but now serves adults as well. As its name implies, the goal of the Outside/Inside Community program is to introduce the 63 adults now enrolled to the outside world.

Learning New Skills

The building, which will eventually serve 125 adults in the program, contains an apartment where participants learn to vacuum, entertain and answer the door; a variety store and laundry to familiarize them with money and using coin-operated washer-dryers; a health club to help them develop muscles and coordination; and a beauty salon where grooming skills are taught.

The facility contains a computer room and a packaging factory where clients are paid for piece work to prepare them to work in a sheltered workshop. It also has art and music rooms, a kitchen and a cafe plaza. Clients move through the facility six hours a day, five days a week, like students changing classes anywhere.

Median Age: 45

Participants range in age from 21 to 62, but the median age for those in the Outside/Inside Community is 45. The average IQ is 32 (70 is considered borderline retarded). Only 5% have graduated from public school special education programs; most have had no formal education. About 10% live with their families; the rest live either in group homes or board-and-care facilities.

“We don’t intend anyone who comes in to be here forever, yet we can’t say whether it will be for six months, one year or two years. It depends on the individual,” said Melinda Sullivan, manager of the community.

Because of Villereal’s rapid progress, for example, Sullivan thinks she is nearly ready to move to a less restrictive environment such as one of the foundation’s work programs in the community.

Class schedules in the Outside/Inside program concentrate on the most essential skills needed by an individual to achieve his or her own particular goals, Sullivan said. That might include learning the ability to live in a group home with minimal supervision or learning how to take a bus or how to work. At the same time, the program emphasizes such basic skills as using a pay telephone and learning how to talk to others, as well as participation in music, games and hobbies.

Moving Into Society

The program’s goal is to move its clients into society. In order to do that, mentally retarded people need to act and look as normal as possible, said the foundation’s executive director, Dr. Robert D. Shushan.

“We all make judgments of people based on their appearance,” Shushan said. Although no one can tell what a person’s IQ is just by looking at him, Shushan said most everyone--including his own children when they were very young--is able to pick out mentally retarded individuals by appearance alone and, hence, react to them in a certain manner. Until 13 years ago, Shushan said he did what most parents and people in the profession thought was best--accepted the appearance of retarded individuals.

For instance, Shushan said until very recently, most dentists failed to encourage parents to have their mentally retarded children’s teeth straightened, thinking it a waste of money. On the contrary, Shushan thinks that the more normal a person looks, the more normally he is treated and when a person feels better about himself, he becomes more open to taking on new challenges.

Shushan now bases the foundation’s programs on the normalization principle, which stresses three basic tenets: First, the more normally a person is treated, the more normal he is apt to be. Second, just as “normal” people do not stop learning after they leave school, neither do retarded people. The third principle is to be wary of overprotection of the developmentally disabled.

Normalization, especially in a person’s appearance, improves an individual’s self-concept, said Shushan, who has published a number of research papers on mentally retarded individuals’ acceptance by society relative to their appearance.

“We are in the business of searching for the human potential where others have just seen disabilities,” he said. “Everyone responds to a pat on the back.”

Relatives Aren’t Alone

The Exceptional Children’s Foundation began in 1946 as a self-help group for parents of mentally and physically handicapped children who were frustrated by the lack of available services and expertise in dealing with their children. Prior to World War II, mentally retarded relatives were often a secret, locked away in the house. The increase in mobility after the war increased interest in treatment programs because now people with developmentally disabled relatives could see they were not alone, Shushan said. In most places, however, treatment consisted largely of institutionalization.

The parents who began the foundation paid the staff to educate their children--until 1978, when it became federal law that all children, regardless of handicap, must be educated. At that point, Shushan said, the State of California contracted with the Exceptional Children’s Foundation to educate the more seriously handicapped children and began to mainstream the others into the public school system. Last June, the foundation closed its last classroom for school-age children, who are now being served by the local school district.

Therefore, the foundation is concentrating, through its infant development program, on those too young for school, and on adults--those born too long ago to receive what is now considered basic training.

Because the foundation serves about 900 adults in a variety of programs from day activity centers to outside employment, it is considering changing its name to Exceptional Citizens Foundation to reflect its changing role, Shushan said.

A New Generation

“There is a new generation of parents whose sons and daughters are getting into (special) programs from the first day through age three which the older generation of parents did not have access to,” Shushan said. “Then they go immediately into a public school program thanks to mandatory special education. So the parents are experiencing a more normal progression in the development of their children.

“And those parents have a broader and different kind of vision for their children because they’ve been moved along in a gradual, careful way by the schools as compared to the generation that didn’t get any help from the school and had to fight to create our kind of organization and struggle to raise money.”

Shushan said participants in the Outside/Inside Community are referred to the program by the seven area Regional Centers, state-funded agencies which provide services for all developmentally disabled people in California. He added that the state pays 70% of the cost of the program. The rest is funded by corporate and private donations to the nonprofit foundation.

The oldest program participant, John Dexter, 62, is a handsome, quiet black man who lives at home with his brother.

“If he were born now, he would never be in this kind of system,” said Murrie Zlotziver, coordinator for developmental activity center programs. “When he was young, there were no services, there was no testing. They just weren’t there.”

With services for the developmentally disabled now being provided starting in infancy, people who come after Dexter and Villereal will be better equipped to reach their potentials, foundation personnel say. Should that happen, revolutionary programs for adults like the Outside/Inside Community may not be necessary several decades down the road.

“The goal of special education is to put us out of business,” Zlotziver said. “I’m not sure it will ever happen, but ideally that is what it is all about.”