CONDUCTAS QUE NOS PREOCUPAN En Personas Con Discapacidad Intelectual Y Del Desarrollo

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CONDUCTAS QUE NOS PREOCUPAN En Personas Con Discapacidad Intelectual Y Del Desarrollo CONDUCTAS QUE NOS PREOCUPAN En Personas con Discapacidad Intelectual y del Desarrollo ¿Qué debes saber? ¿Qué debes hacer? EDITORES Pere Rueda Quitllet y Ramón Novell Alsina CONDUCTAS QUE NOS PREOCUPAN En Personas con Discapacidad Intelectual y del Desarrollo ¿Qué debes saber? ¿Qué debes hacer? © Confederación Plena inclusión España C/ General Perón 32. 1º 28020-Madrid www.plenainclusion.org Diseño y maquetación: SocialCo. Depósito legal: M-8856-2021 Contenido Prólogo. 5 Autores ..................................................................................................... 8 Introducción y marco general ................................................................14 SECCIÓN A Proceso de evaluación integral de la persona y su entorno ..................30 INTRODUCCIÓN SECCIÓN A Introducción sección proceso de evaluación integral de la persona y su entorno ...................................................................................31 CAPÍTULO 1 Conocer a la persona ...........................................................................................48 CAPÍTULO 2 Conocer la salud física ..........................................................................................69 CAPÍTULO 3 Conocer la salud mental ......................................................................................100 CAPÍTULO 4 Conocer el perfil neuropsicológico ......................................................................139 CAPÍTULO 5 Conocer el perfil sensorial ...................................................................................183 CAPÍTULO 6 Conocer el entorno. 221 CAPÍTULO 7 Conocer la función de la conducta. La evaluación funcional .................................252 Índice 4 SECCIÓN B Apoyo e intervención ............................................................................295 INTRODUCCIÓN SECCIÓN B Introducción a la sección de apoyo e intervención ...............................................296 CAPÍTULO 8 Intervención “no planificada” ..............................................................................312 CAPÍTULO 9 Creación de entornos de apoyo y cuidado de alta calidad .....................................336 CAPÍTULO 10 Elaborar e implantar planes de apoyo. .363 CAPÍTULO 11 Utilización de psicofármacos en personas con discapacidad intelectual ................397 CAPÍTULO 12 Desarrollo de entornos sociales competentes ......................................................426 CAPÍTULO 13 Apoyo emocional a los que cuidan: claves para el éxito. .466 SECCIÓN C Programas y servicios ............................................................................499 INTRODUCCIÓN SECCIÓN C Introducción a la sección de programas y servicios ..............................................500 CAPÍTULO 14 Intervención en Atención Temprana ...................................................................504 CAPÍTULO 15 Los planes de apoyo conductual positivos a nivel de escuela ................................560 Prólogo Las sociedades democráticas avanzadas comprenden que la ciudadanía no es un concepto etéreo, sino una condición para la vida desde la dignidad y los derechos. No sería, por tanto, aceptable definir pe- rímetros distintos de ciudadanía en función de condiciones personales, características vitales, y situa- ciones que expresan la diversidad inherente a la naturaleza humana. Es, por ello, función de nuestra sociedad crear las condiciones políticas, económicas, sociales, sanitarias, educativas…para hacer posi- ble ese espacio humano de convivencia que acepte toda singularidad. Sin duda, se debe entender como una responsabilidad pública capaz de dar respuestas adecuadas a cada persona por desafiante que sea el reto que ello supone. El derecho a la personalización desde una dignidad completa y un proyecto de vida en comunidad, se convierte en el sentido final de nuestro movimiento asociativo, de la sociedad en su conjunto y de los gobiernos que nos damos. Hoy esta aspiración no es una realidad generalizada, y especialmente no ocurre para aquellas perso- nas que tienen problemas de salud mental y/o presentan conductas que nos preocupan. Si además son personas con discapacidad intelectual o del desarrollo (autismo, parálisis cerebral y otras), todavía la complejidad en la respuesta es mayor. Lo más probable es que no encuentre fácilmente un enfoque y un sistema de apoyos adecuados y compatibles con esa plena ciudadanía. Plena inclusión ha ido dando pasos para avanzar en ese compromiso, anclado en nuestra ética proyec- tada hacia las personas, familias, organizaciones y entorno social. Si recordamos el Posicionamiento sobre Salud Mental y Discapacidad Intelectual asumido por FEAPS en 2007, podemos decir que sigue teniendo una vigencia total: “Supone un desafío por el sufrimiento que genera en las personas que lo padecen; la dificultad para su iden- tificación; la altísima probabilidad de este grupo de quedar excluido de las oportunidades que por derecho les corresponden para una ciudadanía plena y para una mejora constante en su calidad de vida y en la de su entorno familiar, su alta vulnerabilidad a que se vean significativamente mermadas sus capacidades y posi- bilidades de mantener su salud integral o a que se generen situaciones de trato inadecuado, si no se asegura una formación sólida en valores de los servicios proveedores de apoyo. Las familias de estas personas tienen generalmente y de forma sostenida en el tiempo una situación de gran estrés en relación con la prestación de los apoyos que requieren, originándose también una altísima probabilidad de que disminuyan significati- vamente sus capacidades y oportunidades para asegurar y mejorar la calidad de vida familiar. Además, los recursos que en ocasiones se ofrecen suponen un alejamiento del hogar de la persona, con el consiguiente impacto negativo en la dinámica familiar” Por ello, Plena inclusión comprendió en línea con lo anteriormente expuesto que en nuestras planifica- ciones, acciones y análisis faltaban muchas personas, excluidas por nuestra incapacidad de incluirlas. Generalmente aquellas personas y sus familias que tenían algo en común: precisaban de respuestas más complejas, intensas, multidisciplinares y que sufrían una discriminación interseccional mayor. Así Prólogo 6 nace “Todos somos Todas” estrategia que ha tenido eco a nivel internacional, y parte de la convicción de que las personas y familias que precisan de más apoyos suelen recibir menos, tanto en intensidad como en calidad profesional de la intervención. Sufren un mayor déficit en el ejercicio de sus derechos. No forman parte de la agenda política, ni son visibles, ni tienen oportunidades de participación e in- fluencia. Si algo hemos avanzado en este ámbito, es porque se ha ido generando una transformación social, que no ha ocurrido por casualidad, ni de manera mágica. Si en España se ha mejorado algo en el apoyo a personas con discapacidad intelectual o del desarrollo con problemas de salud mental y personas con dificultades de comportamiento ha sido por un grupo de profesionales del ámbito social y médico que como verdaderos rompehielos han cuestionado las intervenciones segregadoras, basadas en el control y la restricción y han ofrecido otro camino. Una intervención de equipo que, desde la psiquiatría, la psicología, la educación, la aportación de las familias y muy especialmente desde las propias personas, han provocado una comprensión y un aborda- je basado en la ética, la ciencia y la acción profesional cualificada que promueve los derechos desde las personas y sus familias aceptando su originalidad y las formas distintas de estar en este mundo. A estos “viejos rockeros”, de carácter indomable y cuestionadores de los modos de acción imperantes les debemos la incorporación en muchas de nuestras organizaciones y prácticas de una mirada más respetuosa y acorde con nuestra misión, junto a una exigencia permanente en reivindicar recursos y condiciones que hagan posible apoyo de calidad. Gracias muy especiales a Pere Rueda, Ramón Novell y Javier Tamarit que siguen inspirando a muchas personas desde su saber comprometido, tanto en Espa- ña como en otros países, haciendo gala de su calidad humana y generosidad. Gracias también, a muchas otras personas que desde hace años luchan por mejorar desde la ciencia y la buena práctica, propuestas para la vida de las personas con discapacidad intelectual o del desarro- llo con problemas de salud mental y/o problemas de conducta creando redes, articulando propuestas, vertebrando canales de apoyo. Me gustaría hacer un homenaje a tres actores claves en este proceso: las propias personas, que en una vida dura, perseveran en la búsqueda de un merecido espacio de bienestar, a sus familias, especialmente a las madres, que se ven obligadas a construir una fortaleza hecha de amor y sufrimiento, de la que ojalá puedan salir pronto, con el único objeto de vivir como cualquier otra fa- milia. A los equipos de apoyo directo, al cuidador o cuidadora desconocida, ese profesional de base que con muy poco reconocimiento asume un compromiso radical en la “hora de la verdad” del apoyo, donde tiene que interpretar los modelos, las tecnologías, las consignas con la mejor herramienta, su propia humanidad, en escucha y en positivo, disponible hacia la otra persona. Como muchos y muchas sabéis durante años esa acción transformadora de la intervención profesional en salud mental y conductas desafiantes en el ámbito de las personas con discapacidad intelectual o del desarrollo ha estado orientado por el enfoque y contenidos del
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