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PEDRO GUIMARãES

Brazil,

Upon first coming into contact with a child suffering from cerebral palsy, Pedro Guimarães’s life immediately changed—instead of seeing a disability, he saw the enormous potential and intelligence behind a body that failed to obey. This inspiration led him to the realization that traditional treatment and therapy were not enough. Pedro identified that 80 percent of the cases of cerebral palsy could be avoided or treated and the autonomy of these children could be guaranteed by complete inclusion in society.

This profile below was prepared when Pedro Guimarães was elected to the Ashoka Fellowship in 2008.

INTRODUCTION

Upon first coming into contact with a child suffering from cerebral palsy, Pedro Guimarães’s life immediately changed—instead of seeing a disability, he saw the enormous potential and intelligence behind a body that failed to obey. This inspiration led him to the realization that traditional treatment and therapy were not enough. Pedro identified that 80 percent of the cases of cerebral palsy could be avoided or treated and the autonomy of these children could be guaranteed by complete inclusion in society.




THE NEW IDEA

Pedro created the Center of Services to Children with Cerebral Palsy (NACPC), which has become a center of excellence and reference in the integrated treatment of cerebral palsy in Brazil. It is the only center of its kind in the country that offers an interdisciplinary health and education program, with actions that cover all the necessary aspects to stimulate the potentialities and abilities of children with multiple disabilities, as well as their families. The center also monitors and supports the inclusion of children and adolescents with any disability in municipal public schools. This complete model of service is founded on the autonomy and integration of these children into society.

Pedro identified that the incidence of cerebral palsy is higher in poor regions of Brazil. Since this discovery, he has proven that this increased incidence is intimately related to poverty, social vulnerability, and the basic conditions of collective health care such as rudimentary attention to health and sanitation. Pedro shifts the attention that hospitals and health care professionals give to clinical work towards the prevention of cerebral palsy. He also engages public authorities in the creation and reformulation of public health policies founded on this alternative approach. This puts less responsibility on the parents, reduces the social stigma attached to the disease, and positions it in a broader and more realistic socioeconomic context.




THE PROBLEM

Cerebral palsy is a physical-functional disorder resulting from a cerebral lesion during the period of development of the central nervous system or, in other words, from the gestation period until the child reaches two or three years of age. The causes of the disorder almost always result from a lack of oxygen to the brain and can occur during pregnancy, at the moment of birth or during the period of neuromotor development. The principle prenatal causes are: Malformation of the central nervous system, genetic disorders, serious metabolic disturbances (e.g. maternal diabetes), infections, serious anemias, arterial hypertension, hemorrhages, and exposure of the mother to toxic substances such as radiation, alcohol, cocaine, and certain medications. There are also perinatal causes (during and soon after birth) including: Traumatisms during the birth, foetal distress, cerebral circulatory disturbances, premature birth, low-birth weight of the newborn, and the precocious loss of fluid. Cerebral palsy can also be caused by postnatal factors such as cranio-traumatisms, infections of the nervous system (e.g. meningitis and encephalitis), cranio-encephalic traumatism, prolonged convulsions, heart attack, and umbilical infection.

While the causes of cerebral palsy are directly related to public health problems, the Unified Health System (SUS) has not developed preventative public health action for cerebral palsy. Public health organizations and citizen organizations (COs) that provide free assistance to children with cerebral palsy do not acknowledge a connection between its occurrence and socioeconomic vulnerability. Therefore, their policies and practices focus on palliative clinical treatment.

The state of Bahia, like the rest of Brazil, makes no correlation between maternal-infantile health, primary health care, cerebral palsy, and poverty, despite that 14 million inhabitants live in an area of a significant disparity in income, relative to the national average. According to the United Nations Development Programme, in the metropolitan region of Bahia, a resident of the wealthiest locality receives 25 times more than a resident of the poorest—the greatest difference in the country. In Bahia, for each 1,000 children, 49 die before reaching one year. In the rest of the country, the incidence is 36 per 1,000. Low birth weight (below 2,500g) is one of the principle perinatal causes of cerebral palsy. This occurs due to various maternal and environmental factors, such as maternal malnutrition and the use of drugs and alcohol. In Bahia, more than 66,000 children are born per year with a low-birth weight and they are at 30 times more risk to develop cerebral palsy.

In the last two decades, the incidence of cerebral palsy in wealthier countries has decreased with the prevalence of moderate and severe cases varying between 1.5 and 2.5 per 1,000 births. Yet, in poor countries, the incidence is much higher at 7 per 1,000 births. Brazil does not have official epidemiological data to quantify the incidence and prevalence of the disease in the country (reporting cerebral palsy is not mandatory). Considering the index of cerebral palsy in poor countries and data of the Ministry of Health, it can be deduced that there are approximately 1,200,000 people with cerebral palsy in Brazil—350,000 are children. There are 40,000 new cases of cerebral palsy each year—a high number by world standards.

Up to 80 percent of cases of cerebral palsy could be avoided if effective preventative measures were adopted. An important starting point is carrying out complete prenatal care; nevertheless, only 31 percent of women in Brazil attend six prenatal consultations (the minimum number recommended by the World Health Organization). According to the Municipal Committee of Maternal Mortality—which in addition to municipal instances also includes those of UNICEF and the Federal University of Bahia—one of the principle causes of maternal deaths in Salvador is a result of complications in pregnancy, miscarriage, and abortion.

In Brazil, neither the society nor the state is yet ready to guarantee the quality of life for these children. In relation to education, for example, the children are at a disadvantage. The law guarantees that disabled boys and girls frequent regular children’s schools, reaffirming health as a fundamental human right. However, UNICEF reveals that of the 110,000 children designated as “special” in 2004, 78.2 percent attend special needs schools. Their marginalization in society and of a regular school environment results from misinformation: The fear of parents about physical disability; lack of understanding by teachers to work with human diversity (including special needs) in their pedagogical practice; omission by public authorities; as well as the retrograde and technical approaches of health professionals. Despite the existence of laws established by the National Constitution and norms of the Ministry of Education, only a few children with cerebral palsy are included in the Brazilian education system and actively participate in society. The social tendency is to isolate or enroll them in specialized institutions.




THE STRATEGY

In 2001, Pedro founded the Center of Services to Children with Cerebral Palsy (NACPC) to carry out interdisciplinary work in the areas of health and education; with the objective of promoting the integral development of children with cerebral palsy and their families. The actions of NACPC are based on the tripod of: Prevention, health, and inclusive education. NACPC develops preventative actions in maternal and infant health and inclusive actions for the families and children. These actions involve direct discourse on specific public policies that guarantee and allow for action at two poles: The preventative, to avert new cases; and the inclusive, to guarantee the rights of children suffering the consequences of multiple neuromotor dysfunctions. This extensive vision of the problem, allied with the quality of work, has made NACPC a reference center for the disease at both the state and national levels.

One of the strategies of the Center is negotiation with state and municipal governments to implement the new model of services for children with cerebral palsy in their cities. Pedro identifies which municipal maternity hospitals in Bahia have the highest indices of cerebral palsy and directs his actions in preventative education to these localities, setting in motion the necessary undertakings of local prefectures and health authorities. With his practical and technical knowledge as a doctor, Pedro is able to convince public agents to look at prevention and demonstrates step by step how to create a basic healthcare system which reduces the occurrence of cerebral palsy in children.

This work in prevention has led the State Secretary of Health of Bahia (SESAB) to create a working group to include discussion about the question of prevention of cerebral palsy in the health policies of the state. Organized by CEPRED (State Center of Prevention and Rehabilitation of Disabilities)/SESAB, the group brings together diverse entities that serve disabled children through SUS. Strategies and plans of action and incidence in public policies are constructed based on this working group, which measures the quality of healthcare in the state. Together with SESAB and allied with an extensive project of capacity building for all health units, Pedro provides new norms and procedures for services to children with cerebral palsy. These actions are a part of the reformulation within the Ministry of Health for the creation of the National Model of Services for Disabled Children.

In his work in the hospitals, Pedro focuses on out-patient and emergency services—the entrance doors of SUS—so that risk of occurrence of cerebral palsy is lowered. In addition, he works with the Family Health Program where he offers a variety of preventative care such as ultra-sound exams to pregnant women and prenatal consultations.

In partnership with UNICEF, Pedro seeks to make the Interdisciplinary Program of Health and Education possible with the format of services and protocols of NACPC—this being a model of action of public policy to be disseminated throughout the country with concentrated effort in the semi-arid region where precarious conditions increase the incidence of children with disabilities. To this end, NACPC and UNICEF created the project, “To Cherish in the Semi-Arid” (“Afagar not Semi-Arido”) to support, orientate, prevent, and protect. Through direct actions, 450 disabled children, children in situations of risk, and their respective families, form a network of support and attention for these communities of approximately 90,000 people.

Also in partnership with UNICEF, NACPC published the book, Pathways and Conquests in Cerebral Palsy, designed for health and education professionals, as well as the families of disabled children. This book has enabled greater understanding related to conduct, basic care, and preventative actions with a view to guaranteeing the rights of these children to survival, protection, development, and social assistance.

Believing that the rehabilitation process of a child with cerebral palsy cannot be disconnected from the educational process, Pedro created the Transitory School within NACPC. This school offers a syllabus from the perspective of inclusive education, stimulating children, and helping them in their interaction with the environment so that they may later integrate into the mainstream school system. In addition, Pedro developed a program with the Municipal Secretary of Education of Salvador, which includes: Monthly visits to schools of the regular public education network and other private schools that teach children who are members of the Interdisciplinary Program of NACPC; courses and seminars offered to teachers in public or private school networks; orientation in the adaptation of school furnishings and materials; orientation in the adaptation of the syllabus; and pedagogic support for children with cerebral palsy who are included in mainstream education. In 2001, the Transitory School of NACPC worked with only 4 of the 120 children in the network of regular education—today it works with 107 students.

Pedro’s work has already influenced the indices of maternal and infant public health in Bahia. In partnership with the Federal University of Bahia (UFBA) and the Federal University of Minas Gerais, Pedro brought together specialists in epidemiology to evaluate this change and to create for the first time indicators of the incidence and prevalence of infantile cerebral palsy as well as medical protocols for the care of the disease. In 2007, to scientifically strengthen the work in prevention, Pedro, with the UFBA, was able to inaugurate the Center of Research in the Prevention of Disabilities.

Pedro receives requests, with more and more frequency, from public and private universities to visit and write Masters and PhD dissertations at NACPC. He also receives children who have appeared in the clinics of medical colleagues, psychologists, phono-audiologists, occupational therapists and physiotherapists, and were ultimately referred to NACPC. Pedro has also taught a course on multiple disabilities at the invitation of the Municipal Secretary of Education of Angra dos Reis in Rio de Janeiro. The NACPC has crossed regional barriers and influenced both governmental and COs in Belem do Para (in partnership with Project Children’s House), Minas Gerais (with the Association of Disabilities of Pirapora city) and professionals in Maputo city, Mozambique. In addition, Pedro has welcomed important commissions that work with children, such as the international commission of UNICEF (including representatives from Mexico, Guatemala, and South America), the ambassador of Japan and his technical team, and representatives of the Secretary of Social Action of Fortalez—all interested in implementing Pedro’s model in their cities.

In the future, Pedro aims to work with the media to further extend the visibility of cerebral palsy and to break the existing stereotype. After the success of his pilot model in Bahia, Pedro is ready to realize his dream of spreading many centers, with his guidelines of work, throughout Brazil and Africa. Pedro intends to replicate this model throughout Brazil and for partners in Africa in order to attack prejudice and to create official protocols of services for cerebral palsy.




THE PERSON

Pedro grew up in a family deeply affected by abandonment. When he was fifteen-years-old, his father left and his mother took responsibility for the family. She was overloaded with work in order to survive and care for her four children. This helped Pedro to learn from an early age how to resolve his problems, and he developed an uncommon sense of practicality, courage, and deep resilience to confront his fears. He enrolled in university to study medicine and graduated in 1989. From his first year as a student, he was drawn to surgery, in particular, the discipline of Surgical Technique, where he had a leadership role within the university. Together with a group of students, he organized all of the practical parts of the discipline, including classes about the instruments, experimental classes, and the simulation of different kinds of surgery. This type of approach was innovative, and the Faculty of Medicine of the University of Sao Paulo—Ribeirao Preto—took the team’s experience and implemented the same methodology in their classes on Experimental Technique and Surgery.

Upon graduation, Pedro did his medical residency for three years at Hospital Nove de Julho in Sao Paulo and then returned to Salvador. However, keen to follow his academic inclination, he courageously abandoned the clinic and hospital and his budding successful career, to study for a masters and doctorate in Sao Paulo. In 1997, Pedro presented and defended his master’s thesis at the Federal University of Sao Paulo—it was approved with honors, as was his doctoral defense in 1999, which received the highest mark (ten) and great praise.

During this time, Pedro started to work as a surgeon in Casas Andre Luiz, a CO which offered services to the disabled. There he met a child that changed the path of his life—suffering from cerebral palsy, a testicular neoplasm, and pulmonary metastasis. Pedro had never seen a child with cerebral palsy. He decided to deepen his knowledge about children with the disease. This experience had a profound impact on Pedro, and led him to change the focus of his masters and doctorate research to investigate the appearance and causes of congenital malformations.

Pedro believes his life’s trajectory is to create, innovate, and change the way children with cerebral palsy and their family members are cared for. After his return to Salvador in 2001, he founded NACPC. In 2002 he became a professor at the Federal University of Bahia and with their social and scientific support, Pedro, with his wife who is also a doctor, has developed unprecedented and transformative work; recognized and approved by UNESCO and UNICEF.




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