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  • 7 de abril de 2023
  • 725 comentarios

Marcha por la Concientización del Autismo en Rancagua

Hoy en día hay mucha más conciencia sobre las personas con Trastorno del Espectro Austista, TEA, y eso es un motivo para celebrar. Sin embargo, la necesidad es creciente y no se puede esperar que instituciones como Autismo Rancagua y otras cubran las necesidades de nuestra población con TEA a través de rifas, completadas, reciclaje, etc. El estado no puede seguir ausente. Una ley es mejor que nada, pero ya conocemos el dicho de “hecha la ley, hecha la trampa”.

A.C. Mercado-Harvey

El día 1 de abril se conmemoró el Día Internacional de la Concientización del Autismo. Esto dio inicio al mes de abril, que es el mes del autismo. Todos los años, los primeros de abril, se realizan marchas alrededor del mundo con el propósito de la concientización. Rancagua también las realiza y este año no fue diferente.

Según una de las asistentes, Rosita Álvarez, una de las miembros fundadoras de Autismo Rancagua: “En esta marcha se ha podido observar un crecimiento en el apoyo a la agrupación y la participación de diversas personas de diferentes ámbitos, tanto político como vecinales, amigos, etc. Esto ha permitido concientizar y dar a conocer nuestro trabajo en la comunidad. En esta marcha pude observar a mucha más gente dando apoyo y eso me llena de orgullo, porque he podido ser testigo de nuestro crecimiento, gracias al trabajo y esfuerzo de todas las personas que formamos parte de esta agrupación. Esperamos que con esta marcha nuestra voz pueda ­llegar a nuestro gobierno regional, de manera que puedan tomar en cuenta y aprobar todos nuestros proyectos y aclarar, también, que queremos extender nuestros esfuerzos para lograr un catastro nacional para tener una visión de cuántas personas se encuentran dentro del espectro autista en Chile”.

El punto que hace doña Rosita es muy importante, debido a la nueva Ley de Autismo que se aprobó este año, asunto que este medio ha cubierto en más de una ocasión. No podemos desconocer que esta marcha fue en un contexto mucho más positivo que en años anteriores, gracias a la aprobación de tan importante ley. Sin embargo, como hemos advertido anteriormente, los costos son muy superiores a lo que se ha dispuesto en el presupuesto. Por eso, la importancia del catastro. Sin tener una cifra clara y concreta de personas con autismo, será muy difícil tener una cobertura total.

Rosita señaló también que hay mucha gente en comunas rurales que ni siquiera sabe que sus hijos tienen autismo: “Hay que pensar que a estas personas antes se les tildaba de “retrasados”, entonces es muy importante llegar a ellos con la información. Hay que capacitar a los servicios de salud, a los colegios, que todo el mundo se instruya, que se sepa de esta condición para que sean detectados y llegar a toda esa gente. Para que se unan a agrupaciones y podamos ayudar y a temprana edad. A veces, hacemos actividades, como la latatón y llega una persona de 40 años, sobre todo mujeres y te dicen: yo fui a profesionales, al médico, pedí hora con el neurólogo y me diagnosticaron con autismo y lo he tenido toda la vida. Entonces, con este catastro, si se sabe cuántas personas hay, se pueden implementar mejores leyes. Yo me pregunto con la implementación del GES, ¿qué se va a hacer con los que son adultos? Yo creo que esto es trabajar a largo plazo para esto del GES”.

Rosita Álvarez, una de las 12 fundadoras de Autismo Rancagua, describe el sueño que tienen en la organización: “tener una casa, tipo condominio, en que ellos puedan salir, que puedan trabajar, que sea como una ciudad. Son sueños, pero hay que soñar, todo parte de sueños, de lucha, de trabajo”. Inspiradas por sueños, partieron hace años en una plaza, en una sala de clases, hasta llegar ahora a la casa de la organización. “Tenemos una casa hermosa, pero nos quedamos cortos: en la agrupación hay 130 familias y tenemos como 500 en lista de espera. Nos damos cuenta que es mucha la gente que necesita que sus hijos tengan terapia, para que un niño pueda hablar, para que salga adelante, son muchas terapias, mucho dinero. Cada terapia vale de 25 a 30 mil pesos. Entonces, siempre estamos al debe, por muchos años le hicimos el trabajo al gobierno. Estamos a la espera que nos aprueben varios proyectos, porque se necesita mucho dinero para cada niño. Son alrededor de 12 profesionales que tenemos y hay que pagar sueldos. Estamos muy preocupados. La ley está aprobada, pero en 2 años se implementa, porque hay que hacer muchas modificaciones”.

Además, dice, se debe continuar con la tarea de visibilizar el autismo: “los profesores tienen que conocer de autismo, hacer cursos. Estamos lejos de una real inclusión. Los niños van dos horas al colegio y a la casa. Necesitamos que los niños completen todo el ciclo y también ahora, con la ley, un padre podría pedir permiso en el trabajo para ir al colegio de su hijo y ver lo que se está haciendo.”

Concuerdo plenamente con que lo que observa Rosita: hoy en día hay mucha más conciencia del TEA y eso es un motivo para celebrar. No obstante, no es suficiente. Elizabeth Escobedo, presidenta de Autismo Rancagua, quien ya fue entrevistada por este medio, ha señalado lo mismo que nos hizo presente Rosita: que los servicios de terapias que ellos logran dar a l@s niñ@s de nuestra región son insuficientes. La necesidad es creciente y no se puede esperar que instituciones como Autismo Rancagua y otras cubran las necesidades de nuestra población con TEA, a través de rifas, completadas, reciclaje, etc. El estado no puede seguir ausente. Una ley es mejor que nada, pero ya conocemos el dicho de “hecha la ley, hecha la trampa”. En este caso, no es un asunto de trampa, sino de falta de recursos para cubrir terapias que son caras y que se requieren para toda la vida de una persona con autismo.             Finalmente, cabe decir que el sueño de Rosita existe. Las comunidades donde viven personas con autismo y otras discapacidades son una realidad en otros países. La que conozco personalmente es The Haven en Sarasota, Florida, donde hay 6 casas, con dos más en proyecto de construcción. En cada casa viven 8 residentes que tienen cuidado y supervisión 24/7. Además, hay una escuela especial que tiene niñ@s preescolares y de kínder y una bodega, donde trabajan los adultos con discapacidad. ¿Quién paga por semejante maravilla? El gobierno federal de Estados Unidos, que le paga una pensión a cada persona con discapacidad (con eso pagan arriendo y los servicios por vivir allí) y el resto es a través de donaciones de empresas, la comunidad, millonarios, etc. Ese modelo está lejos de ser realidad en Chile, pero esa alianza público-privada sí es posible y es un objetivo que tiene que estar en la legislación, porque las personas con TEA no serán siempre niñ@s y sus padres no vivirán para siempre. Así es que este mes hay que crear conciencia y seguir en la senda de trabajar por el derecho de las personas con TEA.

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