{"id":11248,"date":"2025-06-21T06:51:25","date_gmt":"2025-06-21T06:51:25","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2025\/06\/21\/jose-jimenez-conela-me-gustaria-que-las-personas-con-ela-no-tengan-depender-familias\/"},"modified":"2025-06-21T06:51:25","modified_gmt":"2025-06-21T06:51:25","slug":"jose-jimenez-conela-me-gustaria-que-las-personas-con-ela-no-tengan-depender-familias","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2025\/06\/21\/jose-jimenez-conela-me-gustaria-que-las-personas-con-ela-no-tengan-depender-familias\/","title":{"rendered":"Jos\u00e9 Jim\u00e9nez: \u00abQueremos que las personas que quieren vivir con ELA no tengan que depender de sus familias\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

El 1 de julio har\u00e1 ocho meses que entr\u00f3 en vigor la ley 3\/2024<\/b>, conocida como Ley ELA<\/a><\/b>, una norma con la que se pretende mejorar la calidad de vida de las personas con esta enfermedad y otras similares. Sin embargo, una ley que naci\u00f3 con un gran consenso pol\u00edtico y tras a\u00f1os de lucha, a d\u00eda de hoy apenas est\u00e1 llegando a los afectados. <\/p>\n

Es cierto que se est\u00e1 aportando m\u00e1s dinero para investigar y que, poco a poco, se van agilizando los tr\u00e1mites para el reconocimiento de la discapacidad<\/a> y la dependencia<\/a>, pero lo m\u00e1s urgente, que es que las personas con la enfermedad m\u00e1s avanzada dispongan de los cuidados que necesitan, es a\u00fan una gran asignatura pendiente. <\/p>\n

El recientemente anunciado plan de choque<\/b> para atender a estas personas se espera para despu\u00e9s de verano, pero lo que realmente piden los afectados es que la ley se dote y se desarrolle lo antes posible para que, como pide Jos\u00e9 Jim\u00e9nez Aroca, Vicepresidente de ConELA<\/b> y diagnosticado desde hace unos a\u00f1os, estas personas no tengan que decidir morir porque no tienen dinero para vivir.<\/p>\n

Es cierto que es la investigaci\u00f3n lo que nos va a sacar de la ELA, pero en lo que nosotros insistimos es en los cuidados 24 horas<\/h1>\n

Solo reclamar dinero no vale, hay que estar preparado para gestionarlo<\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5723458\/0\/jose-jimenez-conela-me-gustaria-que-las-personas-con-ela-no-tengan-depender-familias\/<\/p>\n","protected":false},"excerpt":{"rendered":"

\u00abUna persona diagnosticada es independiente 3 o 4 a\u00f1os. 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