Bioética: necesidad de su aplicación en la atención a niños con Síndrome de Down / Bioethics: The Need for Its Application in the Care of Down-syndrome Children

Introducción: la Bioética concierne esencialmente al ser humano, en relación con sus factores ambientales pero su campo es más amplio y mucho más interdisciplinario que la ética médica. Es necesario que todos los profesionales médicos o especialistas de la educación especial conozcan nociones de bioética para su aplicación en el manejo de los niños con síndrome de Down desde la más temprana edad, porque juegan un papel importante en el manejo de los mismos y de la familia desde el nacimiento. Objetivo: destacar la necesidad de los principios de la bioética en la atención integral a los niños con síndrome de Down y sus familias en todos los niveles de atención médica, principalmente en la Atención Primaria de Salud. Conclusión: el tratamiento al niño y la niña con Síndrome de Down debe incluir una integralidad en los aspectos de atención incluyendo la aplicación de los principios bioéticos con el fin de alcanzar la mayor dignidad posible(AU)

Introduction: Bioethics essentially concerns the human being, in relation to the environmental factors but its scope is broader and more interdisciplinary medical ethics. It is necessary that all medical professionals or specialists from special education to know notions of bioethics for the management of children with Down Syndrome from an early age, since these notions play an important role in managing these children and the family. Objective: Highlight the need for the bioethics principles in the comprehensive care for children with Down syndrome and their families at all levels of health care, mostly in Primary Health Care. Conclusion: The treatment to children with Down syndrome should include a comprehensiveness in aspects of care including application of bioethical principles in order to achieve the greatest possible dignity(AU)

"Measuring up" to ethical standards in service delivery to college students on the Autism Spectrum: A practical application of Powell's model for ethical practices in clinical phonetics and linguistics.

This paper examined an interdisciplinary college-based support programme, the Communication Coaching Program (CCP), designed for students diagnosed on the autism spectrum in light of six ethical constructs described by Powell. Collecting data to monitor the successes and ongoing needs of individual participants in the programme is of vital importance, of course, but only addresses a portion of the efficacy question. In addition, the authors, who co-direct the programme and represent different professional expertise and perspectives, recognize the importance of determining whether their evolving intervention model has also been successful in meeting the ethical standards of their respective professions. Careful review of the 4 years of the CCP's operation in terms of ethical constructs has yielded evidence that the CCP, although based on sound principles of theory and scholarship, should be further individualized to meet the particular needs of participants diagnosed with deficits in social communication and executive functioning skills.

Análisis de la actuación docente del maestro de audición y lenguaje en Almería / Analysis of the educational performance of speech and hearing teachers in Almeria

Habiendo transcurrido 20 años de andadura y desarrollo profesional desde el surgimiento del maestro de audición y lenguaje itinerante, parece conveniente reflexionar sobre el papel que ha venido desempeñando esta figura con objeto de aprehender las consideraciones oportunas que mejoren los planteamientos a adoptar de cara a promover la calidad de su actuación educativa. Por otra parte, nos encontramos inmersos en la actualidad en un proceso de reforma universitaria que afectará al conjunto de los roles profesionales de los docentes del siglo XXI , siendo necesario realizar aportaciones que delimiten y refuercen el ámbito de la atención a la diversidad en la formación inicial de los maestros al desaparecer las especialidades universitarias que se encargaban de dicha actuación. Con este estudio se pretende contribuir a la comprensión de la realidad de la acción educativa de estos profesionales realizando un recorrido por los contenidos y objetivos de su actuación educativa y la relación que los mismos guardan con el currículo de las áreas establecidas a lo largo de la etapa (AU)

The figure of the itinerant speech and hearing teacher emerged 20 years ago. Given the career and professional development since that time, it seems appropriate to reflect on the role of these teachers in order to improve the quality of their educational performance. In addition, a process of university reform is currently underway, which will influence the professional roles of teachers in the 21st century. Consequently, contributions are required to define and reinforce attention to diversity in initial teacher training, since specialized university courses on this topic have disappeared. This study aimed to contribute to the understanding of the reality of the educational performance of these teachers. To do this, the present investigation will revise the contents and aims of their educational performance, focussing on their relationship with the curriculum of the different areas established through the stages (AU)

From interdisciplinary to integrated care of the child with autism: the essential role for a code of ethics.

To address the developmental deficits of children with autism, several disciplines have come to the forefront within intervention programs. These are speech-pathologists, psychologists/counselors, occupational-therapists/physical-therapists, special-education consultants, behavior analysts, and physicians/medical personnel. As the field of autism therapy moves toward a more comprehensive, holistic and interdisciplinary model, the complexity of an interdisciplinary service delivery model could pose significant challenges. The difficulty of carrying out this approach could lead to sub-par programs being established. With integration among the disciplines a necessity, the ethical principles and language common to all the contributing disciplines is argued as the appropriate integrating force. An outline of these principles and a draft code of ethics are offered to introduce high standards and expectations for all participating in such a program.

Lectura y escritura en niños con síndrome x frágil: estrategias de intervención / Reading and writing in Fragile X Syndrome children: intervention strategies

El síndrome X frágil (SXF) es la causa más frecuente de discapacidad intelectual hereditaria. Se caracteriza por un fenotipo físico y conductual muy específicos. El SXF está causado por una mutación del gen FMR1 situado en el cromosoma X, locus Xq27.3. La mutación del gen produce un número anómalo de repeticiones de la tripleta CGG (Citosina- Guanina- Guanina). El análisis del SXF representa un buen modelo para determinar las relaciones entre genes y conducta. El área de la lectura y la escritura en la población X frágil muestra demasiadas zonas oscuras. Los principales problemas de los SXF con la lectura y la escritura tienen su origen en alteraciones del lenguaje y en dificultades motoras y de integración sensorial. Nuestro trabajo pretende ampliar y sistematizar de manera orgánica algunos de los aspectos que consideramos fundamentales para mejorar la práctica educativa y la restauración de las deficiencias lectoras. En esta línea de actuación destacamos tanto estrategias metodológicas como propuestas programáticas que conviene explorar para conocer su valor pedagógico y su eficacia práctica (AU)

Syndrome X fragile (SXF) is the most common cause of inherited intellectual disability. It’s characterized by a very specific physical and behavioral phenotype. The SXF is caused by a mutation in the FMR1 gene located on chromosome X, locus Xq27.3. Gene mutation causes an abnormal number of repetitions of the triple CGG (cytosine-guanine-guanine). The SXF analysis represents a good model to determine the relationship between genes and behavior. The area of reading and writing in the fragile X population samples too many dark areas. The main problems of the SXF with reading and writing have their origin in disorders of language and motor difficulties and sensory integration. Our work aims to expand and systematize organically some aspects that we consider fundamental for improving educational practice and restore reading deficiencies. In this line of action we highlight both methodological strategies and programmed proposals which should be explored to learn about their educational value and practical effectiveness (AU)

The discursive practice of learning disability: Implications for instruction and parent-school relations.

This article serves as an invitation to rethink and to broaden the scope of learning disabilities (LD) research and practice. We begin with 3 assumptions: Education in a representative democracy is inevitably a political enterprise; social justice is everyone's responsibility, but educators have a special role to play; and segregated schooling is neither equal nor equitable. After an analysis of the primary extant discourses, we argue for a more comprehensive and more openly political vision of the LD field, which we think is supported by Disability Studies in Education. Finally, we draw 3 conclusions relevant to our collective work as researchers and educators. First, learning disabilities are not objective fact; they are historically and culturally determined. Second, disability is both a personal and a societal attribute. Finally, learning disabilities are not and have never been immutable. We contend that we are ethically bound to transform educational practices to both welcome and accommodate everybody's children.

Normalizing difference in inclusive teaching.

Inclusion practices and special education can be transformed by using a disability studies perspective, which constructs differences as natural, acceptable, and ordinary. Although inclusion is a moral imperative in promoting social justice, some inclusive practices continue to marginalize students with disabilities. A truly inclusive school reflects a democratic philosophy whereby all students are valued, educators normalize difference through differentiated instruction, and the school culture reflects an ethic of caring and community.

Os pacientes portadores de necessidades especiais: revisando os conceitos de incapacidade, deficiência e desvantagem / Reviewing the concepts of disability, impairment and handicap

Este artigo tem como objetivo divulgar a comemoração do ano de 2003 como o Ano Europeu das Pessoas com Deficiência e discutir e rever os conceitos adotados em saúde sobre o tema. Segundo a Organização Mundial de Saúde (OMS), 10 por cento das pessoas dos países do Terceiro Mundo, em tempos de paz, são portadoras de algum tipo de deficiência. No Brasil, o Instituto Brasileiro de Geografia e Estatística (IBGE) estimou, para o ano 2000, a existência de 24,5 milhões de brasileiros nessa condição. Na área odontológica classifica-se a pessoa deficiente como pertencente ao grupo de pacientes Portadores de Necessidades Especiais (PPNE). A CID-10 afirma que as Deficiências - impairments - dizem respeito à perda ou anormalidade de estrutura ou função psicológica, fisiológica ou anatômica; as Incapacidades - disabilities - refletem as conseqüências da deficiência em termos de qualquer restrição ou falta de habilidade para se realizar uma atividade de uma maneira ou dentro da amplitude normal para o ser humano; e as desvantagens - handicaps - são aquelas resultantes ou deficiência ou de uma incapacidade que limita ou impede o cumprimento de um papel que é normal para aquele individuo. A Classificación Internacional del Funcionamiento, de la discapacidad y de la salud - CIF, completa a CID-10 e é fundamental para definir parâmetros e conceitos para os que atuam na área dos PPNE. A CIF faz uma abordagem abrangente e profunda, auxiliando os profissionais a descrever e a compreender a complexidade dos PPNE. A visão reducionista pensa o PPNE como uma paciente com uma doença grave ou com um gap mental. Devemos pensar o PPNE como um paciente que, por alguma razão, está, no momento do atendimento, necessitando de uma atenção especial. O padrão normal é mais uma realidade mitológica do que biológica