LILIANA MAYO

Peru,

For 25 years, Liliana Mayo has been demonstrating that persons with “different abilities” can integrate themselves into regular schools, the labor force, and the community. Through the educational model developed in her learning center, Liliana helps children with intellectual disabilities develop the functional abilities necessary to become largely independent, productive and happy in all the stages of their lives. In this process, Liliana works closely with families and employers to generate mutual respect and understanding.

This profile below was prepared when Liliana Mayo was elected to the Ashoka Fellowship in 2005.

INTRODUCTION

For 25 years, Liliana Mayo has been demonstrating that persons with “different abilities” can integrate themselves into regular schools, the labor force, and the community. Through the educational model developed in her learning center, Liliana helps children with intellectual disabilities develop the functional abilities necessary to become largely independent, productive and happy in all the stages of their lives. In this process, Liliana works closely with families and employers to generate mutual respect and understanding.




THE NEW IDEA

Liliana has revolutionized the way Peruvian society views and treats the disabled. Since 1979 when she founded the “Centro Ann Sullivan del Peru” (CASP), Peru has become one of Latin America’s most progressive societies in terms of treatment of the disabled. CASP is one of the most recognized and internationally renowned educational institutions for young people with disabilities in Peru. Liliana’s approach—and that of CASP—provides these children, their families, and the professionals working with them the educational and psychological help needed for confident, self-sufficient, independent lives. The result is a society where the disabled are fully integrated, respected, understood, and ultimately, where they lead happier and more productive lives. The result is also a shift in thinking of the “disabled” to those “differently able.”

CASP currently works with children who have autism, severe mental retardation, Down syndrome, and various behavioral and learning problems. CASP functions as an international research, training and demonstration model center, in which 350 people with different abilities are educated and trained based on their own experiences and needs. This way, materials and programs are designed in a way that maximizes their independence, productivity and happiness once they leave the center, and helps with effective integration into schools and the workplace. These materials are then disseminated more broadly for education and training of the disabled across Peru.

All the educational programs at CASP are focused on developing skills that will make students productive, self-sufficient citizens. It is one of the few centers in the world to offer programs designed for phases of life spanning from early childhood to adulthood. Moreover, CASP has developed a Remote Education Program using educational videos and teleconferences, specially designed for parents and professionals working with children with different abilities who do not have the luxury to come into the centers. Liliana’s models are already being replicated by eight different institutions in Brazil, Argentina, Chile, and Spain.

After 25 years of developing the pedagogical model at CASP, Liliana is today focused on reaching as many cities as she possibly can with her Remote Education Program. This will enable her to reach the maximum number of families across Latin America—and around the world—without the need and the cost of CASP centers and staff, and will also help her work around inefficient government policies and institutions that resist change. Liliana has already had interest in distance education materials from Japan, India, Mongolia, and Tanzania.




THE PROBLEM

For decades, individuals with disabilities were largely hidden from public view so that neither the government nor the public understood their needs or difficulties. No accurate statistics about the number of people with disabilities in Peru exist, making it more difficult to acknowledge these individuals, let alone develop programs to aid in their integration.

According to the World Health Organization (WHO), about 10 percent of the total population of a typical country has some kind of disability. However, the last census done in Peru shows there are only 1.3 percent of people with disabilities, and of this amount, 12 percent have mental disabilities. This shows that most people with disabilities are hidden, especially the ones with mental and developmental disabilities. If the WHO figures are correct, there are approximately three million people with disabilities in Peru, 360,000 of whom have intellectual disabilities, and most of whom are unaccounted for and unrecognized.

Peru has 397 special education centers, 79 percent of which are state-owned. Ninety-two percent are located in urban areas, with 45 percent located in Lima. These statistics pose two problems. The first is a reliance on a government which is typically unwilling to experiment with new methods and innovative approaches regarding integration, rather than institutionalization, of the disabled. Indeed, most existing programs use traditional approaches focused on controlling the “improper” conducts of “abnormal” children, making integration and progress towards self-sufficiency that much more difficult. The second is that access to educational services for children with disabilities is grossly imbalanced in favor of those living in urban areas.

On the other hand, 25 years ago there was no debate about services for people with disabilities or the “rights” of the disabled, today this debate is raging. Families are less embarrassed about their children, and many are venturing forth as spokespeople and advocates for their loved ones. Some have independently founded Parents and Friends with Autism Association (ASPAU). Liliana’s work has been a stepping stone for these changes, laying the foundation for a healthier, more tolerant society.




THE STRATEGY

The methodology carried out in the CASP is based on the application of behavioral teaching in a functional/natural approach. It is a lifetime educational program consisting of 20 subprograms (from infant stimulation through supported employment) to educate parents, their children, and professionals about those with disabilities and how they can be most effectively integrated into society and lead largely independent lives.

Students learn to be productive and sociable like any other people. Many begin the program unable to communicate, read, or write. All students receive a customized learning plan, designed according to their abilities and their rate of progress. The tasks they learn range from small household chores like setting the table to more complex ones, such as going to the closest store to buy bread. For the “student-workers,” these small advances can mean the difference from being a burden to becoming an active member of the family who contributes to its well-being.

The parents’ involvement is crucial in this learning process. Parents begin to believe in their children when they see they are given opportunities and can perform. They soon learn to be their children’s best teachers and supporters, with many participating in training workshops as volunteers. Currently, around 1,000 parents and professionals are trained each year in CASP.

Equally as important is the inclusion and education of employers, because the more that witness the effectiveness and commitment of CASP graduates in the workplace, the greater number of job opportunities emerge for the disabled. For CASP, to obtain a successful labor insertion of its “student-workers” means they remain at the same workplace for three straight years. They do not request incentives to companies for contracting them. They are hired not because of charity, but because of the quality of their work.

CASP has most recently developed an audio conference long-distance education program serving outlying regions of Peru and is currently developing an Internet resource center for families worldwide who come to learn how to teach their children. The widespread dissemination of her methodology will allow Liliana to scale and reach her dream of providing educational opportunities to the greatest number of people, regardless of geographic or economic barriers.

To this end, CASP is supported by the Telefónica Foundation, which facilitates the teleconferences with several centers and professionals in diverse countries around the world. An alliance with the Schiefelbusch Life Span Institute of University of Kansas has given CASP the opportunity to become a demonstration and research center. Several researchers have spent months at the center as volunteers in order to apply the new learning methodologies, putting the center at the cutting edge in this field. Accordingly, TV networks such as Discovery come frequently to CASP in order to develop programs on special education based on their methodology.




THE PERSON

While Liliana was finishing her clinical psychology studies in 1979, she was transferred from a hospital to a special education school, as a punishment for “asking too many questions.” There, she witnessed the cruel conditions in which young people with severe mental disabilities are forced to live—much like institutionalized prisoners. Her first experience with a girl with autism was Patty, a four-year-old girl, who remains a source of inspiration to this day. Patty demonstrated to Liliana that people with different abilities are able to learn very quickly and have much to offer to their families and to society if only given the chance.

When Liliana realized there was no specialized educative center that was taking care of children like Patty in Peru, and that no “normal” educational programs accepted them, she made the decision to found her own center, the Centro Ann Sullivan del Peru. It was first located in the garage of her parents’ house and served eight children.

By 1984, she was taking care of 50 children. Her parents decided to sell their house, so that she could go to United States, meet the authors of the books she had been studying, and test the effectiveness of her strategies against experts in the field. She applied to the University of Kansas in Lawrence, because she had been impressed with the writings of a psychologist, Dr. Judith LeBlanc.

In 1985, she began her master’s and doctorate degree studies at Kansas University, which agreed to let her attend classes one semester per year, giving her the freedom to apply to CASP what she was learning each term and to search for funding in the United States. Dr. LeBlanc became a key partner in the alliance with Kansas University, providing volunteer researchers and consultants to CASP each year.

Currently, Liliana combines her work at CASP with her roles as professor of psychology at two universities in Lima, and as honorary associate professor in the Human Development and Family Life Department at the University of Kansas. Liliana is also involved in many informal activities to ensure equal rights and opportunities for those with different abilities, including advocating for legal reform.

Because of her dedication to health issues for the community welfare, Liliana and CASP have received several prizes, including the Peruvian Prize for Professional Excellence, the Medal of Honor of Cuba, the Queen Sofía of Spain International Prize, the Alcatel Regional Prize for the creative use of technology in education, the University of Kansas Distinguished Services Prize, and the Campodónico Peruvian for her services to society.




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