Tatiana Gómez durán

A mother of a child with cerebral palsy, Tatiana Gómez-Durán is creating a center where parents learn how to manage the treatment that their neurologically-impaired children receive.

Tatiana believes that children with neurological disorders benefit more from having parents who understand and actively treat their impairments than from receiving intermittent, impersonal treatment by doctors in far-away clinics. By the time her son Santiago, who was born with cerebral palsy, was four years old, Tatiana had grown frustrated with the care he was receiving–not just in Bogotá, but in internationally renowned medical centers in Baltimore, Boston, Chicago and Philadelphia–and with the huge prices her family paid for so little in return. She finally gave up their arduous daily trips for an hour or two of treatment. These sessions were unproductive and did not relate to his home life. Instead, she dedicated herself to organizing and managing a regimen of physical, educational, and emotional development for Santiago. Tatiana did not dismiss the expertise of doctors and therapists, but fit their professional services into a broader scheme in which she and her husband were the primary care-givers, the home replaced the clinic, and treatment was integrated with play and daily activities. In this environment, Santiago learned to walk and read in the same nurturing home where he grew up and played, meeting these challenges with his parents by his side. Having watched her son defy doctors' speculation that he may never learn to walk, Tatiana believes that her methods can greatly help other neurologically-impaired children. (Santiago, now a teenager, not only walks on his own, but swims more than a half-mile daily, speaks two foreign languages, and despite severe dyslexia hopes to go to college in a few years). Parents too will benefit, since they can treat their children more cheaply, conveniently, and sustainably at home. Parents can travel less frequently to distant clinics and pay less often for professionals' time, while involving themselves integrally in their children's development. Furthermore, Tatiana believes that her in-home, family-empowerment style can benefit the healthcare and therapy industries. When doctors entrust parents to provide most care themselves, they have more time to spend with their patients, and have the chance to build sustainable long-term relationships. Families will be less frustrated with treatment–a common problem under the current system. Tatiana is working to convince professionals of this benefit in order to gain their support.

Neurological disorders like cerebral palsy–which results from pre-, peri- or post-natal trauma–have a high incidence in Colombia, a country with large underdeveloped areas and widespread poverty. The population also suffers the stresses of a decades-long civil war. Colombian children with neurological disorders and their families face a number of challenges. Many families are either embarrassed by their children's impairments or do not recognize that the children have the potential to develop, so they ignore the problem. Those families that do seek treatment at one of Colombia's few centers feel that the required daily sessions just take too much time and money. They may eventually give up, damaging the potential of the child, and often destroying the family itself through frustration and guilt. According to Tatiana, in Colombia mothers are blamed if children do not turn out "right." Since many women don't work outside the home, Tatiana's model specifically aims to empower mothers, although she incorporates fathers into the strategy as well.Even for families that can afford daily treatment, the existing medical system does not provide optimal care. Treatment reduces a patient's overall condition to a collection of particular symptoms, each treated by specialized doctors and therapists. Doctors tend to miss opportunities for synergy and integrated therapies. Furthermore, industry professionals are proprietary about their expertise, generally not sharing written diagnoses and evaluations, and not giving parents tips on how to spur their children's development at home.

Tatiana calls the development of neurologically-impaired children a "race against time." Once they fall behind, it becomes increasingly difficult for them to catch up. So, Tatiana began to run the race herself alongside Santiago. She created a regimen of therapy, education, and development that built on the best practices of experts, but shifted the burden of care provision from detached, departmentalized professionals to loving parents. She took from a study produced by the Institute for the Achievement of Human Potential of Philadelphia a focus on the frequency, intensity, and duration of stimuli in therapeutic efforts. The model she began to develop, however, has been mostly a ground-up, adaptive reaction to Santiago's evolving needs and ultimate potential, and is completely novel in her region.Now Tatiana is creating a Center for Integrated Evaluation and Training that will empower parents of neurologically-impaired children and will reshape the way the children are cared for. The Center will host a trans-disciplinary team of part-time specialists (a pediatrician, a neurologist, a psychologist, a nutritionist, an educator, and speech and physical therapists) who will perform evaluations and training sessions for parents. These generalists will be the primary replicators of Tatiana's methodology, a new generation of holistically-minded, family-empowering health-care experts without precedent in Colombia. The initial weeklong encounter between a child and the team will feature a thorough diagnosis. Parents will get all necessary diagnostic information, detailed treatment regimens with tracking mechanisms, and instruction in how to carry out treatment in the home. The team will use videos that parents can refer to back at home. Subsequently, these families will receive monthly visits from generalists, trained in trans-disciplinary treatment by the center's staff, who will assess progress and suggest modifications as necessary. The first sessions will include families of different social and economic status so that the Center can gauge their needs and tailor its service to them.Tatiana will promote the Center as a resource providing information and services to parents of neurologically-impaired children. She has already amassed a personal library on cerebral palsy–including some volumes that she translated from English into Spanish to help other parents. She also intends to create a database that parents can access.
Through the Center, parents can unite to provide moral support, share a pool of recyclable therapeutic devices like casts and braces, and raise money to help defray the costs of treating their children. The children will also benefit from the center's social dimension as a place to meet and interact.In order to convince government and the private sector to buy into her idea, Tatiana plans to utilize the domestic and international contacts she built up over years as a business consultant. She believes government and business will like her plan because it benefits parents by lowering costs, benefits doctors by stabilizing relations with patients, and benefits government by reducing the social costs of disabled people and their families who have not been functioning as well as they might. Tatiana believes that her strategy will reduce government health care costs as well, perhaps to the point that the government will have incentive to subsidize parents who essentially act as para-professionals in the care of their impaired children. In addition to using her extensive contacts to seek out potential partners, Tatiana also wants to use workshops, conferences, and field trips to clinics in Colombia and abroad to create a "domino effect," as she says, that will change how people care for the neurologically impaired everywhere.

Santiago's birth with cerebral palsy was painful to Tatiana and her husband. But Tatiana saw a path, an opportunity, in her baby son's condition. "Life was giving us an opportunity," she says, "to give the best of ourselves to this child, to grow as a family, and through this learning experience to offer other families and other children the opportunity to succeed as well." Tatiana is an excellent strategic thinker who has degrees in management from the Arthur D. Little Management Education Institute and in public administration from Harvard's John F. Kennedy School of Government. As she experimented with therapy and education for Santiago, she took meticulous notes and then used her experience to train other professionals. She always tried to minimize frustrations for Santiago by playing to his strengths and avoiding obstacles his weaknesses create–for instance, accommodating his dyslexia by using video to teach literature–while maintaining her holistic aim of developing the whole range of human physical, communicative, and educational skills. She documented every step in order to make adaptations continually and ultimately to share her success with others.
Over the years, families who heard of Tatiana's work would come to her for advice, and Tatiana began sharing what she had learned. She started working with parents to develop their own in-home therapies. Now that Santiago's development has been so successful, and since teenage Santiago demands less of his mother's time, Tatiana is concentrating on replicating her methods. With a decade and a half of experience as a caring and creative mother of a child with cerebral palsy, Tatiana is committed to realizing the opportunity Santiago's birth provided her: to create new systems and standards of care for neurologically-impaired children.