LUZ DARY CHAVEZ

Sectors:
Target Population:
Colombia,

The mother of a disabled child, Luz Dary Chávez has created the first community- managed center for the handicapped in rural Colombia. The center is serving to improve the lives of the disabled and to help families address issues of shame and hopelessness for their children and relatives.

This profile below was prepared when Luz Dary Chavez was elected to the Ashoka Fellowship in 2000.

INTRODUCTION

The mother of a disabled child, Luz Dary Chávez has created the first community- managed center for the handicapped in rural Colombia. The center is serving to improve the lives of the disabled and to help families address issues of shame and hopelessness for their children and relatives.




THE NEW IDEA

Luz Dary has developed a community-based center that both provides services in areas where they would not otherwise exist and brings disabled children and adults out of back rooms and into community life. Although the center does employ professionals to administer treatment, the day-to-day management and decision making are handled by community members with handicapped relatives. Luz Dary's center, called DAVIDA, also helps families to overcome the shame they feel because of their disabled relatives, demonstrating to them that the disabled have abilities and that they can help their relatives by supporting their progress. Through the center, parents also learn how to work with their children at home in order to give them the full benefits of therapy.In addition to being community-conceived and run, Luz Dary's center is unique in that it integrates diagnostic, therapeutic, educational, and recreational services. This stands in contrast to other centers in Colombia that serve only one specific need, thus obligating parents to transport their children from place to place for various types of treatment. Luz Dary is also developing a diversified financial base for the center, using government support to pay for therapeutic services, collecting donations, and developing revenue-generating microenterprises according to the needs and abilities of the disabled.




THE PROBLEM

In Colombia, as in most countries in Latin America and the world, the disabled population receives little attention, particularly in impoverished areas. The lack of education and available information regarding disabilities prompt many families to literally hide their disabled kin in their homes, ashamed to take them out in public or seek help. The government does not invest in their needs, nor are there any government subsidies for medications. A further challenge is that therapeutic equipment (such as walkers, back supports and other apparatuses that provide support to the disabled and deformed) is very expensive and thus also inaccessible to the poor.Moreover, few centers exist to treat and support the disabled and their families. The majority of those that do exist are expensive and usually located in big cities. They are thus inaccessible to most Colombians, particularly rural people. These centers, run by professionals who often are not personally sensitized to the needs of the disabled and their families, also tend to be intimidating and lack caring atmospheres. Additionally, few centers exist for the disabled that respond to all of their needs, so parents spend much time in transit between doctors, physical therapists, psychologists, and so on. This, combined with the social stigma, makes the task of truly addressing their children's disabilities even more daunting for parents. In particular, there tend to be few or no resources at all for the disabled in the rural, mountainous regions of Colombia, although there are many handicapped people in need there. Conditions of poverty and war contribute to high incidences of disability in Colombia. As for her particular rural community, Luz Dary attributes the prevalence of congenital disabilities to malnutrition, drug addiction, and agricultural fumigation. In Luz Dary's municipality alone, there are four hundred ninety disabled people, and prior to Luz Dary's initiatives, they had few treatment options, especially locally.




THE STRATEGY

The primary focus of Luz Dary's strategy to improve conditions for Colombia's disabled is her center, DAVIDA. A team of volunteer community members–the majority of whom have relatives with disabilities–administer the center and run its recreational and educational activities, including the teaching of ceramics and handicrafts. Luz Dary also oversees a team of professionals who attend to patients' needs in physical, respiratory, occupational and speech therapy, psychology, orthodontics, sign language, and general medicine. Certain doctors receive pay. Others, such as students of physical therapy, volunteer their services.

The center has had a powerful effect on both the physical and mental well-being of its clients, as well as the attitude of parents toward their disabled children. For example, a twelve-year-old boy had been hit by a car and was in a coma. His mother had given up on him and kept him alone in a corner of the house. Luz Dary found out about him and convinced his mother to bring him to the center. The community members welcomed the boy, and the mother worked with various DAVIDA therapists and learned how to continue therapy at home. Eventually the boy regained his ability to sit, crawl, walk and talk. He now has confidence in himself and goes to therapy on his own, and his mother has become an active participant at the center.

Luz Dary and her colleagues are able to draw people into her center by searching out disabled people who are hidden away in homes, and by talking with community members, who tell them when they know of a person in that situation. Luz Dary then finds creative, non-threatening ways to approach them in order to attract them to the center. For example, someone in the community informed Luz Dary that there was a woman who worked in a beauty salon who had a disabled child who was being kept at home. Rather than confront the woman, Luz Dary asked if she could give her a pedicure in her home as she had a special-needs child at home and could not leave often. This prompted the woman to tell her that she also had a disabled child at home. Through this kind of personal contact, Luz Dary and her committee of relatives of the disabled are able to convince parents to bring their children to the center. DAVIDA also seeks out disabled individuals in the community through national informational centers on the disabled and by speaking with teachers. It is clear that her strategy is working, as DAVIDA is currently attending to more than two hundred fifty of the municipality's four hundred ninety disabled.

The first center Luz Dary created is fully operational in La Tebaida, Quindio. With a strong team that is able to run the center without Luz Dary's direct management, she is ready to move on and help others establish similar centers. In order to spread her model nationally, Luz Dary and two colleagues travel to communities to talk with families about their children and what they can do for them to encourage their participation in future community centers. They also hold meetings, teaching those interested where to look for the hidden disabled. Word of mouth has also helped Luz Dary to spread her idea to other areas, as parents from various places have approached her to teach them how to establish centers in their own communities. Two new centers are already in the works. She plans to spread her model to the provincial and national levels within five years. She also has the potential to spread her idea internationally.

Luz Dary was nominated to participate in a Partners of the Americas women's leadership training course in the United States and a wheelchair-distribution program in Guatemala, where she was able to share her work with others.Luz Dary has succeeded in securing funding and resources from public and private sources on the local, national, and international levels. The Colombian government currently provides DAVIDA with funding predicated for twenty patients–which Luz Dary stretches to cover the costs of seventy-five or more. Organizations in Connecticut and London are among those that have provided financial support from abroad. Another part of her financial strategy includes creating microenterprises that are directly related to the needs and abilities of the disabled. She has already designed innovative, low-cost therapeutic apparatuses from available materials, which have been evaluated by professionals as suitable for therapeutic use with disabled children. Professionals have been so impressed with her innovation that they have encouraged her to patent her designs. She intends for this initiative to spin off into a microenterprise in which parents involved in the center build the apparatuses she has already designed as well as begin to design new ones. She is also promoting a microenterprise in which the disabled patients of the center make handicrafts and ceramics for sale. Not only do the products garner income, but the production itself is an exercise in the development of the motor skills of the patients.




THE PERSON

Luz Dary is a woman of modest means who has overcome tremendous adversity in her life. She is the second of eleven children. She assisted her mother in the birth of her tenth sibling at the age of thirteen. At fourteen, she took a course to become a community health promoter, but her career and schooling were cut short when she got pregnant and had her first child at the age of fifteen. Seventeen years later, Luz Dary had her second child, who, due to serious medical error, was born with cerebral hypoxia, leaving her a spastic connatal tetraplegic. Luz Dary herself was inspired by a priest who suggested to her that, "We have exceptional children because we are called on to be exceptional parents." Watching her daughter struggling desperately to walk left Luz Dary feeling frustrated, and she began to conceive her first apparatus to help her daughter. With her daughter as the original impetus and tester of the equipment, she has to date designed an inexpensive walker, a specialized crib/bed, and a jumper for special-needs children.

With a handicapped child herself, Luz Dary began to notice that her neighbors were hiding their disabled children. She decided that they needed to meet each other and begin to work as a team to gain support for their children. She used her background as a health promoter to go door-to-door to talk to the parents and organize them. By doing so, she was able to convince La Tebaida's mayor to create a center for the disabled. From the beginning, Luz Dary was interested in running the center. At one point, the mayor's office hired a foreign specialist to train the center's employees, but he refused to train Luz Dary because she was not a professional. The board then asked Luz Dary to leave the center because she lacked formal training. The families that had been attending the center began to show up on Luz Dary's doorstep, complaining about the unfriendly treatment they were receiving at the center and asking for her help. It was then that she decided to begin her own community-run center. She has since had tremendous success with DAVIDA and has been nationally recognized for her work there.




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