{"id":1511,"date":"2025-01-24T12:00:00","date_gmt":"2025-01-24T18:00:00","guid":{"rendered":"https:\/\/imaginepediatrics.org\/the-value-of-engaged-caregivers-in-improving-outcomes-for-children-with-special-health-care-needs\/"},"modified":"2025-03-24T14:44:24","modified_gmt":"2025-03-24T19:44:24","slug":"the-value-of-engaged-caregivers-in-improving-outcomes-for-children-with-special-health-care-needs","status":"publish","type":"post","link":"https:\/\/www.imaginepediatrics.org\/es\/libro-blanco\/the-value-of-engaged-caregivers-in-improving-outcomes-for-children-with-special-health-care-needs\/","title":{"rendered":"El valor de la participaci\u00f3n de los cuidadores para mejorar los resultados de los ni\u00f1os con necesidades especiales de salud"},"content":{"rendered":"\n<div class=\"wp-block-uagb-container uagb-layout-flex uagb-block-e533e799 alignfull uagb-is-root-container\"><div class=\"uagb-container-inner-blocks-wrap\">\n<div class=\"wp-block-uagb-container uagb-block-328a9eea\">\n<div class=\"wp-block-group resources-breadcrumb is-horizontal is-content-justification-left is-nowrap is-layout-flex wp-container-core-group-is-layout-e0598304 wp-block-group-is-layout-flex\">\n<div class=\"wp-block-uagb-advanced-heading uagb-block-04b6bac8\"><div class=\"uagb-separator\"><\/div><div class=\"uagb-heading-text\"><a href=\"https:\/\/imaginepediatrics.org\/es\/recursos\">Recursos<\/a><\/div><\/div>\n\n\n\n<div class=\"wp-block-uagb-advanced-heading uagb-block-a2a52a38\"><div class=\"uagb-separator\"><\/div><div class=\"uagb-heading-text\">\/  <span data-spectra-dc-field=\"current_post|post_title\" class=\"uag-pro-dynamic-content\">Loading\u2026<\/span>   <\/div><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-uagb-container uagb-block-57a877b8\">\n<div class=\"wp-block-uagb-advanced-heading uagb-block-1f1457a0\"><h1 class=\"uagb-heading-text\">El valor de la participaci\u00f3n de los cuidadores para mejorar los resultados de los ni\u00f1os con necesidades especiales de salud<\/h1><\/div>\n\n\n\n<p style=\"font-size:16px\">Jan 24, 2025 | Taylor Beery, Director de Innovaci\u00f3n y Administraci\u00f3n y Cofundador, Alison Curfman, M.D. Cofundadora<\/p>\n\n\n\n<p class=\"has-proxima-sera-font-family\" style=\"font-size:24px\">El valor de la participaci\u00f3n de los cuidadores para mejorar los resultados de los ni\u00f1os con necesidades especiales de salud \u200d<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Resumen ejecutivo<\/strong><\/h4>\n\n\n\n<p style=\"font-size:16px\">Los ni\u00f1os con necesidades especiales de salud (CSHCN, por sus siglas en ingl\u00e9s) representan una poblaci\u00f3n significativa que requiere una atenci\u00f3n integral y coordinada para lograr resultados de salud \u00f3ptimos. Esta declaraci\u00f3n de posici\u00f3n describe el papel cr\u00edtico de los cuidadores comprometidos como parte del equipo de atenci\u00f3n m\u00e9dica y esencial para mejorar los resultados de salud, ampliar el acceso a la atenci\u00f3n y reducir los costos generales de atenci\u00f3n m\u00e9dica para CSHCN. <\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Contexto<\/strong><\/h4>\n\n\n\n<p style=\"font-size:16px\">Cerca de 14,5 millones de ni\u00f1os en los Estados Unidos tienen necesidades especiales de salud, y estos ni\u00f1os representan el 50% del gasto en atenci\u00f3n m\u00e9dic<sup>pedi\u00e1trica1<\/sup>.  <\/p>\n\n\n\n<p style=\"font-size:16px\">Estos ni\u00f1os se enfrentan a un sistema de atenci\u00f3n fragmentado y descoordinado que plantea importantes retos, entre ellos:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:16px\"><strong>Coordinaci\u00f3n de atenci\u00f3n compleja<\/strong>: Los ni\u00f1os requieren la gesti\u00f3n a trav\u00e9s de m\u00faltiples especialistas y proveedores, sin embargo, el 21,8% de las familias con CSHCN cubiertos por Medicaid informan que necesitan ayuda adicional para coordinar la atenci\u00f3n. Entre estas familias, el 23,1% nunca reciben la ayuda que necesitan.\u00b2 <\/li>\n\n\n\n<li style=\"font-size:16px\"><strong>Access Barriers<\/strong>: While these children require consistent medical care and specialized equipment: &nbsp;&nbsp;\n<ul class=\"wp-block-list is-style-default\">\n<li style=\"font-size:16px\">S\u00f3lo el 78,1% tiene un proveedor de atenci\u00f3n m\u00e9dica constante <\/li>\n\n\n\n<li>El 36,9% acude a urgencias (frente al 20,9% con seguro privado)<\/li>\n\n\n\n<li>El 17,6% no puede acceder al tratamiento de salud mental necesario<\/li>\n\n\n\n<li>El 10,5% tiene dificultades para obtener las derivaciones necesarias<\/li>\n\n\n\n<li>El 35,9% tiene problemas para conseguir citas\u00b2.<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li style=\"font-size:16px\"><strong>Retos de integraci\u00f3n<\/strong>: Los ni\u00f1os requieren atenci\u00f3n m\u00e9dica y conductual coordinada, junto con apoyo para los determinantes sociales de la salud (SDOH por sus siglas en ingl\u00e9s), sin embargo, m\u00e1s de un tercio de las familias reportan barreras para acceder a estos servicios integrados. \u00b2<\/li>\n<\/ul>\n\n\n\n<p style=\"font-size:16px\">Esta fragmentaci\u00f3n tiene impactos mensurables tanto en los resultados de salud como en el bienestar familiar, con un 35,9% de las familias CSHCN cubiertas por Medicaid que informan de barreras relacionadas con los costes para recibir los servicios necesarios.\u00b2 <\/p>\n\n\n\n<p style=\"font-size:16px\">Esta fragmentaci\u00f3n en la prestaci\u00f3n de la atenci\u00f3n resulta en resultados sub\u00f3ptimos, mayor utilizaci\u00f3n de la atenci\u00f3n m\u00e9dica y una carga emocional, mental y financiera significativa para los cuidadores que deben coordinar las complejas necesidades diarias de atenci\u00f3n a trav\u00e9s de m\u00faltiples proveedores y sistemas<sup>.3<\/sup><\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\">Pruebas <strong>que respaldan el compromiso de los cuidadores<\/strong><\/h4>\n\n\n\n<p style=\"font-size:16px\">En pediatr\u00eda, cada vez son m\u00e1s los estudios que demuestran el importante impacto que tiene el compromiso, la educaci\u00f3n y el apoyo de los cuidadores en los resultados de salud y en los costos de la atenci\u00f3n m\u00e9dica de los ni\u00f1os con necesidades especiales. La literatura muestra que los enfoques de atenci\u00f3n centrada en la familia est\u00e1n asociados con una mejor adherencia a los planes de tratamiento, una mejor coordinaci\u00f3n de la atenci\u00f3n y una menor utilizaci\u00f3n de la asistencia sanitaria.<sup>4<\/sup> La evidencia demuestra consistentemente que cuando los cuidadores reciben el apoyo adecuado y se comprometen, tanto los resultados como los costes mejoran en todos los grupos de edad y condiciones.<sup>5<\/sup>   <\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Impacto de las pol\u00edticas basadas en la evidencia<\/strong><\/h4>\n\n\n\n<h5 class=\"wp-block-heading has-urbane-rounded-font-family\" style=\"font-size:14px\"><strong>Demostraciones del Centro de Innovaci\u00f3n de CMS<\/strong><\/h5>\n\n\n\n<p style=\"font-size:15px\">El Centro de Innovaci\u00f3n de Medicare y Medicaid (CMMI por sus siglas en ingl\u00e9s) ha puesto en marcha varias iniciativas que demuestran el valor de los modelos de atenci\u00f3n centrados en la familia y la participaci\u00f3n de los cuidadores:<\/p>\n\n\n\n<h5 class=\"wp-block-heading has-urbane-rounded-font-family\" style=\"font-size:14px\"><strong>Modelo de Atenci\u00f3n Integrada a la Infancia (InCK)<\/strong><\/h5>\n\n\n\n<p style=\"font-size:15px\">El Modelo InCK representa el enfoque integral de CMMI para la transformaci\u00f3n de la atenci\u00f3n pedi\u00e1trica<sup>.6<\/sup> Los componentes clave incluyen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:15px\">Modelos de pago alternativos que apoyan la coordinaci\u00f3n de la atenci\u00f3n centrada en la familia<\/li>\n\n\n\n<li style=\"font-size:15px\">Integraci\u00f3n de la atenci\u00f3n m\u00e9dica f\u00edsica y conductual con los servicios sociales<\/li>\n\n\n\n<li style=\"font-size:15px\">\u00c9nfasis en la identificaci\u00f3n precoz y la prevenci\u00f3n<\/li>\n\n\n\n<li style=\"font-size:15px\">Compromiso familiar obligatorio tanto a nivel de atenci\u00f3n individual como de gobernanza del programa<\/li>\n<\/ul>\n\n\n\n<h5 class=\"wp-block-heading has-urbane-rounded-font-family\" style=\"font-size:14px\"><strong>Iniciativa de Modelos de Innovaci\u00f3n Estatal (SIM por sus siglas en ingl\u00e9s)<\/strong><\/h5>\n\n\n\n<p style=\"font-size:15px\">La Iniciativa SIM ha apoyado a los estados en el desarrollo de planes integrales de transformaci\u00f3n de la atenci\u00f3n m\u00e9dica que incluyen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:15px\">Implementaci\u00f3n de modelos de pago alternativos centrados en la pediatr\u00eda<\/li>\n\n\n\n<li style=\"font-size:15px\">Desarrollo de programas de navegaci\u00f3n familiar<\/li>\n\n\n\n<li style=\"font-size:15px\">Integraci\u00f3n de trabajadores comunitarios de la salud en los equipos de atenci\u00f3n<\/li>\n\n\n\n<li style=\"font-size:15px\">Creaci\u00f3n de acuerdos de ahorro compartido que incentiven la participaci\u00f3n familiar<\/li>\n<\/ul>\n\n\n\n<h5 class=\"wp-block-heading has-urbane-rounded-font-family\" style=\"font-size:14px\"><strong>Programas estatales de innovaci\u00f3n de Medicaid<\/strong><\/h5>\n\n\n\n<p style=\"font-size:15px\">Varios programas estatales de Medicaid han sido pioneros en iniciativas exitosas de apoyo familiar:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:15px\">El programa Health Homes for Children de California demostr\u00f3 una reducci\u00f3n del 25% en las estancias hospitalarias al implantar servicios integrales de apoyo <sup>familiar7<\/sup><\/li>\n\n\n\n<li style=\"font-size:15px\">El programa STAR Kids de Texas inform\u00f3 de una mejor adherencia a la medicaci\u00f3n y una menor utilizaci\u00f3n de los servicios de urgencias gracias a la coordinaci\u00f3n de la atenci\u00f3n centrada en la <sup>familia8<\/sup><\/li>\n\n\n\n<li style=\"font-size:15px\">Medicaid de Wisconsin cre\u00f3 un modelo de gesti\u00f3n de casos espec\u00edficos para ni\u00f1os con complejidad m\u00e9dica, que permite programas de atenci\u00f3n sostenibles con un alto grado de satisfacci\u00f3n de las <sup>familias9<\/sup><\/li>\n<\/ul>\n\n\n\n<p style=\"font-size:15px\">Estas iniciativas estatales han aportado pruebas valiosas para ampliar los modelos de atenci\u00f3n centrada en la familia a escala nacional.<\/p>\n\n\n\n<h4 class=\"wp-block-heading has-proxima-sera-font-family\" style=\"font-size:24px\"><strong>Directrices de la Academia Americana de Pediatr\u00eda<\/strong><\/h4>\n\n\n\n<p style=\"font-size:15px\">El informe cl\u00ednico de la Academia Americana de Pediatr\u00eda (AAP por sus siglas en ingl\u00e9s) subraya la importancia de un enfoque coordinado de la atenci\u00f3n domiciliaria para ni\u00f1os con necesidades complejas de atenci\u00f3n m\u00e9dica<sup>.10<\/sup> El informe hace hincapi\u00e9 en establecer un hogar m\u00e9dico, proporcionar formaci\u00f3n integral a los cuidadores y apoyar a las familias para optimizar la salud de los ni\u00f1os y minimizar las hospitalizaciones a trav\u00e9s de una atenci\u00f3n interdisciplinaria centrada en la familia.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Innovaci\u00f3n y resultados en el mundo real<\/strong><\/h4>\n\n\n\n<p style=\"font-size:15px\">Imagine Pediatrics es un grupo m\u00e9dico tecnol\u00f3gicamente habilitado que ofrece atenci\u00f3n virtual y a domicilio las 24 horas del d\u00eda, los 7 d\u00edas de la semana, a ni\u00f1os con necesidades especiales de salud. A trav\u00e9s de contratos de Medicaid basados en el valor, el equipo multidisciplinar dirigido por pediatras trabaja en colaboraci\u00f3n con proveedores, cuidadores, recursos comunitarios y planes de salud para ampliar el acceso de los pacientes a una atenci\u00f3n m\u00e9dica, conductual y social totalmente integrada y en el hogar. Este modelo innovador reconoce que los cuidadores comprometidos obtienen mejores resultados, situ\u00e1ndolos en el centro del sistema de prestaci\u00f3n de cuidados y equip\u00e1ndolos con servicios integrales para apoyar las complejas necesidades de salud de sus ni\u00f1os. Imagine Pediatrics no sustituye al equipo m\u00e9dico o al hogar m\u00e9dico del ni\u00f1o. Por el contrario, se coordina con los proveedores y colaboradores para garantizar el acceso continuo a una atenci\u00f3n aguda y longitudinal basada en el valor, de modo que los ni\u00f1os y sus cuidadores puedan pasar menos tiempo innecesario en el hospital y m\u00e1s tiempo seguros en sus hogares y comunidades.    <\/p>\n\n\n\n<p style=\"font-size:15px\">Los aspectos m\u00e1s destacados del programa son:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:14px\">Acceso 24\/7 a servicios de atenci\u00f3n pedi\u00e1trica virtual y en el hogar<\/li>\n\n\n\n<li style=\"font-size:14px\">Atenci\u00f3n m\u00e9dica, conductual y social integrada <\/li>\n\n\n\n<li style=\"font-size:14px\">Herramientas tecnol\u00f3gicas de coordinaci\u00f3n de cuidados y comunicaci\u00f3n familiar<\/li>\n\n\n\n<li style=\"font-size:14px\">Apoyo espec\u00edfico a los cuidadores, que incluye formaci\u00f3n y recursos individualizados.<\/li>\n\n\n\n<li style=\"font-size:14px\">Apoyo integral para abordar los determinantes sociales de la salud y la navegaci\u00f3n por un sistema de atenci\u00f3n m\u00e9dica complejo y fragmentado.<\/li>\n\n\n\n<li style=\"font-size:14px\">Coordinaci\u00f3n y colaboraci\u00f3n con el ecosistema asistencial para garantizar que todos se centran en ofrecer una atenci\u00f3n integral y plenamente informada a la persona.<\/li>\n\n\n\n<li style=\"font-size:14px\">An\u00e1lisis de datos de salud de la poblaci\u00f3n medidos a trav\u00e9s de servicios digitales, virtuales y en el hogar centrados en el paciente e integrados con datos de utilizaci\u00f3n basados en reclamaciones.<\/li>\n<\/ul>\n\n\n\n<p style=\"font-size:15px\">Los resultados de este enfoque centrado en el cuidador demuestran mejoras significativas tanto en los resultados como en los costes:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li style=\"font-size:14px\">M\u00e1s de 30,000 pacientes atendidos por el modelo en 3 estados<\/li>\n\n\n\n<li style=\"font-size:14px\"><strong><em><sup>~ <\/sup><\/em><\/strong>Reducci\u00f3n de m\u00e1s del 10% en el \u00edndice de costes m\u00e9dicos (porcentaje de pagos de primas de seguros que se abonan a proveedores y centros por servicios m\u00e9dicos) hasta la fecha (primera poblaci\u00f3n de pacientes iniciada el 1\/1\/23).<\/li>\n\n\n\n<li style=\"font-size:14px\">87+ Net Promoter Score de pacientes\/cuidadores <\/li>\n\n\n\n<li style=\"font-size:14px\">Prevenci\u00f3n de m\u00e1s de 5,000 visitas a urgencias y emergencias mediante intervenciones primarias oportunas, de las cuales el 80% no requirieron visitas de cuidados intensivos en los 30 d\u00edas siguientes.<\/li>\n<\/ul>\n\n\n\n<p style=\"font-size:14px\">Estos resultados validan los hallazgos de la AAP, CMMI y los programas estatales, al tiempo que demuestran la escalabilidad de los modelos integrales con participaci\u00f3n de los cuidadores para las poblaciones CSHCN. \u200d<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Recomendaciones pol\u00edticas<\/strong><\/h4>\n\n\n\n<ol start=\"1\" class=\"wp-block-list\">\n<li style=\"font-size:14px\"><strong>Reconocimiento de los cuidadores como trabajadores de atenci\u00f3n m\u00e9dica esenciales<\/strong>\n<ul class=\"wp-block-list\">\n<li>Alinearse con las recomendaciones de la AAP para reconocer formalmente el cuidado familiar como un componente cr\u00edtico de la prestaci\u00f3n de atenci\u00f3n m\u00e9dica para <sup>CSHCN10<\/sup><\/li>\n\n\n\n<li>Garantizar que las pol\u00edticas y los programas de atenci\u00f3n m\u00e9dica reconozcan formalmente el cuidado de CSHCN como un trabajo esencial, incluidos los requisitos de trabajo de Medicaid, las pol\u00edticas de licencia m\u00e9dica familiar y las protecciones laborales.<\/li>\n\n\n\n<li>Implementar herramientas de evaluaci\u00f3n estandarizadas para evaluar las necesidades de los cuidadores y los requisitos de apoyo.<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li style=\"font-size:14px\"><strong>Apoyo a modelos de atenci\u00f3n innovadores<\/strong>\n<ul class=\"wp-block-list\">\n<li>Dise\u00f1ar modelos de pago alternativos que alineen los incentivos para pagadores, proveedores y familias con el fin de promover una participaci\u00f3n significativa de los cuidadores.<\/li>\n\n\n\n<li>Crear acuerdos de ahorro compartido que recompensen a proveedores y pagadores por el \u00e9xito de la colaboraci\u00f3n con los cuidadores y la mejora de los resultados.<\/li>\n\n\n\n<li>Apoyar opciones flexibles de prestaci\u00f3n de cuidados que respondan a las diversas necesidades de las familias, manteniendo al mismo tiempo la rentabilidad.<\/li>\n\n\n\n<li>Apoyar la coordinaci\u00f3n de los cuidados mediante la tecnolog\u00eda y la comunicaci\u00f3n entre cuidadores, proveedores y pagadores.<\/li>\n\n\n\n<li>Integrar a los trabajadores de salud comunitarios y a los orientadores familiares en los equipos de atenci\u00f3n para reducir la brecha entre la atenci\u00f3n cl\u00ednica y las necesidades familiares.<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li style=\"font-size:14px\"><strong>Mayor acceso a los servicios de apoyo<\/strong>\n<ul class=\"wp-block-list\">\n<li>Apoyar la telesalud y las opciones de atenci\u00f3n virtual para aumentar el acceso y reducir las barreras a la atenci\u00f3n, incluso a trav\u00e9s de las fronteras estatales y en las zonas rurales.<\/li>\n\n\n\n<li>Garantizar la cobertura de la coordinaci\u00f3n de la atenci\u00f3n integral a trav\u00e9s de servicios m\u00e9dicos, conductuales y sociales.<\/li>\n\n\n\n<li>Facilitar el acceso a los servicios de apoyo comunitarios y a los recursos sociales.<\/li>\n\n\n\n<li>Reformar los requisitos de concesi\u00f3n de licencias y credenciales para ampliar la mano de obra m\u00e9dica y conductual, especialmente en las zonas desatendidas.<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li style=\"font-size:14px\"><strong>Inversi\u00f3n en recursos para cuidadores<\/strong>\n<ul class=\"wp-block-list\">\n<li>Financiar programas integrales de formaci\u00f3n y educaci\u00f3n de cuidadores que desarrollen las habilidades y la confianza necesarias para gestionar necesidades de atenci\u00f3n complejas.<\/li>\n\n\n\n<li>Apoyar servicios de relevo que eviten el agotamiento y permitan un cuidado sostenible.<\/li>\n\n\n\n<li>Proporcionar a los cuidadores acceso exclusivo a programas de salud mental y apoyo entre compa\u00f1eros.<\/li>\n<\/ul>\n<\/li>\n<\/ol>\n\n\n\n<h4 class=\"wp-block-heading\" style=\"font-size:24px\"><strong>Conclusi\u00f3n<\/strong><\/h4>\n\n\n\n<p style=\"font-size:15px\">Las pruebas demuestran claramente que los cuidadores comprometidos son socios esenciales para lograr resultados de salud \u00f3ptimos para los ni\u00f1os con necesidades especiales de salud. Mediante la aplicaci\u00f3n de pol\u00edticas y herramientas que reconozcan, apoyen y empoderen a los cuidadores, podemos mejorar la calidad de la atenci\u00f3n, reducir los costes y atender mejor a esta poblaci\u00f3n vulnerable. Este cambio fundamental en la forma en que vemos y valoramos a los cuidadores es fundamental para construir un sistema de atenci\u00f3n m\u00e9dica m\u00e1s eficaz y equitativo para los CSHCN.  <\/p>\n\n\n\n<p style=\"font-size:14px\"><em>Esta declaraci\u00f3n de posici\u00f3n representa la primera de una serie de publicaciones sobre pol\u00edticas que examinan temas cr\u00edticos que afectan a los ni\u00f1os con necesidades especiales de salud y a sus cuidadores. Futuras publicaciones explorar\u00e1n propuestas pol\u00edticas espec\u00edficas en mayor detalle. \u200d <\/em><\/p>\n\n\n\n<p style=\"font-size:15px\"><strong>Referencias<\/strong><\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li class=\"has-link-color wp-elements-bd4f6196ead5ee0716ef1ceef6cb1ca2\" style=\"font-size:14px\">U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau. (2023). Children with Special Health Care Needs. National Survey of Children&#8217;s Health 2021-2022. Retrieved from <a href=\"https:\/\/mchb.hrsa.gov\/programs-impact\/focus-areas\/children-youth-special-health-care-needs-cyshcn\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/mchb.hrsa.gov\/programs-impact\/focus-areas\/children-youth-special-health-care-needs-cyshcn<\/a>    <\/li>\n\n\n\n<li style=\"font-size:14px\">Medicaid and CHIP Payment and Access Commission (MACPAC). \u00abMedicaid Access in Brief: Children and Youth with Special Health Care Needs.\u00bb Issue Brief, March 2023.  <\/li>\n\n\n\n<li style=\"font-size:14px\">Kuo DZ, Houtrow AJ; Council on Children with Disabilities. Recognition and Management of Medical Complexity. Pediatrics. 2016;138(6):e20163021.   <\/li>\n\n\n\n<li style=\"font-size:14px\">Kuhlthau KA, Bloom S, Van Cleave J, et al. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011;11(2):136-143.   <\/li>\n\n\n\n<li style=\"font-size:14px\">Kuo DZ, Bird TM, Tilford JM. Associations of family-centered care with health care outcomes for children with special health care needs. Matern Child Health J. 2011 Aug;15(6):794-805. doi: 10.1007\/s10995-010-0648-x. PMID: 20640492.    <\/li>\n\n\n\n<li class=\"has-link-color wp-elements-064ece6998cba637ea29bba8d121c090\" style=\"font-size:14px\">Centers for Medicare &amp; Medicaid Services. (n.d.). Integrated Care for Kids (InCK) Model. Retrieved January 22, 2025, from <a href=\"https:\/\/www.cms.gov\/priorities\/innovation\/innovation-models\/integrated-care-for-kids-model\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.cms.gov\/priorities\/innovation\/innovation-models\/integrated-care-for-kids-model<\/a>   <\/li>\n\n\n\n<li class=\"has-link-color wp-elements-ad5a6cde84f47a29044fcdd28834cfee\" style=\"font-size:14px\">California Department of Health Care Services. (2015, December 14). Health Homes for Patients with Complex Needs: California Concept Paper Version 3.0 (Draft-Final). Retrieved from <a href=\"https:\/\/www.dhcs.ca.gov\/services\/Documents\/Health%20Homes%20for%20Patients%20with%20Complex%20Needs%20California%20Concept%20Paper%20Version%203.0%20(Draft-Final)%2012-14-15.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.dhcs.ca.gov\/services\/Documents\/Health%20Homes%20for%20Patients%20with%20Complex%20Needs%20California%20Concept%20Paper%20Version%203.0%20(Draft-Final)%2012-14-15.pdf<\/a>   <\/li>\n\n\n\n<li class=\"has-link-color wp-elements-cc7416a6a3c0446d66ca6177f18a181a\" style=\"font-size:14px\">Texas Health and Human Services Commission. (2023, December). STAR Kids Managed Care Advisory Committee Report to the Executive Commissioner. Retrieved from <a href=\"https:\/\/www.hhs.texas.gov\/sites\/default\/files\/documents\/sb7-skmcac-annual-report-dec-2023.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.hhs.texas.gov\/sites\/default\/files\/documents\/sb7-skmcac-annual-report-dec-2023.pdf<\/a>   <\/li>\n\n\n\n<li style=\"font-size:14px\">Agrawal R, Perkins J. Mending, not Ending, Fee-for-Service for Children With Medical Complexity. Hosp Pediatr. 2024 Jan 1;14(1):e18-e20. doi: 10.1542\/hpeds.2023-007491. PMID: 38105691.    <\/li>\n\n\n\n<li style=\"font-size:14px\">Elias ER, Murphy NA; Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012 May;129(5):996-1005. doi: 10.1542\/peds.2012-0606. Epub 2012 Apr 30. PMID: 22547780.      <\/li>\n<\/ol>\n\n\n<div class=\"left-aligned-button\">\n<a class=\"button-td-custom home\" aria-label=\"\" href=\"https:\/\/imaginepediatrics.org\/es\/recursos\" rel=\"follow noopener\" target=\"_self\" role=\"button\">\n<div style=\"position: relative; z-index: 2\">Volver a Recursos<\/div>\n<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" viewBox=\"0 0 330 80\" width=\"330\" height=\"80\" preserveAspectRatio=\"xMidYMid meet\" style=\"width: 100%; height: 100%; transform: translate3d(0px, 0px, 0px); content-visibility: visible;\n    position: absolute;\n    top: 0;\n    left: 0;\nz-index:1;\">\n  <defs>\n    <clipPath id=\"__lottie_element_11\">\n      <rect width=\"330\" height=\"80\" x=\"0\" y=\"0\"><\/rect>\n    <\/clipPath>\n  <\/defs>\n  <g clip-path=\"url(#__lottie_element_11)\">\n    <g transform=\"matrix(1,0,0,1,0,0)\" opacity=\"1\" style=\"display: block;\">\n      <g opacity=\"1\" 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uagb-infobox__content-wrap  uagb-infobox-icon-above-title uagb-infobox-image-valign-top\"><div class=\"uagb-ifb-content\"><div class=\"uagb-ifb-title-wrap\"><h3 class=\"uagb-ifb-title\">Obtenga acceso ilimitado a su equipo de atenci\u00f3n m\u00e9dica a trav\u00e9s de mensajes, llamadas, o consultas en v\u00eddeo al usar nuestra aplicaci\u00f3n m\u00f3vil.<\/h3><\/div><\/div><\/div>\n\n\n\n<div class=\"wp-block-group is-vertical is-content-justification-stretch is-layout-flex wp-container-core-group-is-layout-46ac74cc wp-block-group-is-layout-flex\" style=\"margin-top:0;margin-bottom:0;padding-top:0;padding-bottom:0\">\n<div class=\"wp-block-uagb-buttons uagb-buttons__outer-wrap uagb-btn__default-btn uagb-btn-tablet__default-btn uagb-btn-mobile__default-btn uagb-block-35f9adf9\"><div class=\"uagb-buttons__wrap uagb-buttons-layout-wrap \">\n<div class=\"wp-block-uagb-buttons-child uagb-buttons__outer-wrap uagb-block-59ac1a86 wp-block-button\"><div class=\"uagb-button__wrapper\"><a class=\"uagb-buttons-repeater wp-block-button__link\" aria-label=\"\" href=\"#\" rel=\"follow noopener\" target=\"_self\" role=\"button\"><div class=\"uagb-button__link\">\u00bfCumple mi hijo con los requisitos?<\/div><\/a><\/div><\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>El valor de la participaci\u00f3n de los cuidadores para mejorar los resultados de los ni\u00f1os con necesidades especiales de salud Jan 24, 2025 | Taylor Beery, Director de Innovaci\u00f3n y Administraci\u00f3n y Cofundador, Alison Curfman, M.D. Cofundadora El valor de la participaci\u00f3n de los cuidadores para mejorar los resultados de los ni\u00f1os con necesidades especiales [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","footnotes":""},"categories":[61],"tags":[],"class_list":["post-1511","post","type-post","status-publish","format-standard","hentry","category-libro-blanco","FUNCTIONS-category-libro-blanco"],"spectra_custom_meta":{"_encloseme":["1"],"rank_math_internal_links_processed":["1"],"_wpml_media_duplicate":["1"],"_wpml_media_featured":["1"],"_top_nav_excluded":[""],"_cms_nav_minihome":[""],"_last_translation_edit_mode":["translation-editor"],"_wpml_word_count":["2547"],"_edit_lock":["1741031964:2"],"rank_math_seo_score":["19"],"_edit_last":["2"],"rank_math_analytic_object_id":["29"],"external 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