Being a Healthy Adult: How to Advocate for Your Health and Health Care

The purpose of this guide is to teach young adults with disabilities how to become strong self-advocates for their own health and health care. The guide includes activities, worksheets, and tips for communicating effectively with health care providers, keeping track of personal health information, and figuring out what supports will help each individual make the health-related choices that are right for him or her.

Roberson, K. (2010). Being a healthy adult: How to advocate for your health and health care.
New Brunswick, NJ: The Elizabeth M. Boggs Center on Developmental Disabilities.

Source: http://rwjms.rutgers.edu/boggscenter/products/BeingaHealthyAdult.html

Derechos de Educación de las Familias y Estudiantes Inmigrantes

“El propósito del folleto es educar a los padres inmigrantes acerca de las leyes estatales y federales que les garantizan acceso a servicios de educación pública y el derecho a recibir material en su idioma nativo. En la primera sección se hace referencia a extractos de estas leyes y se presentan útiles resúmenes del significado de la terminología legal para los padres. Algunas de las leyes descritas no se relacionan directamente con el acceso al idioma pero contienen información importante que los padres inmigrantes necesitan conocer.”

Este juego de herramientas fue posible gracias a “A Voice for Immigrant Children,” un proyecto de el New Jersey Immigration Policy Network fundado por el Schumann Foundation.
Partes de este juego de herramientas fueron adaptadas de la presentación “Ensuring Effective Services to Immigrant &/or LEP/ELL Children & Families: It’s Right, & It’s the Law!” © Statewide Parent Advocacy Network

Recuperado de spanadvocacy.org

Education Rights of Immigrant Students & Families

“The purpose of the booklet is to educate immigrant parents about state and federal laws guaranteeing them access to public school services and materials in their home languages. Excerpts from these laws are quoted in the first section along with helpful summaries of what this legal terminology means for parents. Some of the laws described are not directly related to language access but contain important information that immigrant parents need to know.”

This toolkit was made possible by “A Voice for Immigrant Children,” a project of the New Jersey Immigration Policy Network funded by the Schumann Foundation.
Portions of this toolkit were adapted from the presentation “Ensuring Effective Services to Immigrant &/or LEP/ELL Children & Families: It’s Right, & It’s the Law!” © Statewide Parent Advocacy Network

Retrieved from spanadvocacy.org

The OSEP Spanish Glossary Project (English-Spanish)

The right of parents to participate in educational decision-making regarding their child with a disability is an important underpinning of the Individuals with Disabilities Education Act (IDEA). However, for many parents, lack of understanding of the education and legal terminology included in IDEA, may limit their ability to effectively accomplish this important role. This is an especially significant challenge for parents of children with disabilities who are not native English Speakers. The OSEP Spanish Glossary was developed by the Region 1 Parent Technical Assistance Center@SPAN to ensure that educational terms related to the implementation of IDEA used in documents to promote parents’ authentic participation are translated in a uniform and comprehensible way, across states, geographical regions and communities of Spanish speakers.

OSEP Spanish Glossary of Common IDEA Terms, Region 1 Parent Technical Assistance Center at the
Statewide Parent Advocacy Network, New Jersey (2011). Retrieved from spanadvocacy.org

Resources:

Shared Plan of Care (SPoC)

A Shared Plan of Care (SPoC) is a tool that is designed to help you communicate and share information about your child with members of their care team, including doctors, nurses, therapists, emergency responders, respite care providers, teachers, and child care providers. A SPoC allows families to share information on how to best care for their child’s health needs. Rather than relying on separate medical care plans at each provider’s office, a SPoC engages multiple care team members to contribute to and build upon a single plan.

Once the SPoC has been filled out, all members of the care team should have access and refer to it on a regular basis, and practice in alignment with agreed upon goals and treatment plans. When it is implemented correctly, a comprehensive SPoC can help strengthen relationships, enhance communication, and improve outcomes.

My Shared Plan of Care was developed by the Department of Health in consultation with its partners, The New Jersey Chapter, American Academy of Pediatrics (NJAAP), the Statewide Parent Advocacy Network (SPAN), and Special Child Health County Case Management Units (SCHS CMU), and with contributions from parents and youth with special health care needs.

Plan Compartido De Cuido (SPoC)

Un plan compartido de Atención (SPoC, por sus siglas en inglés) es una herramienta que está diseñada para ayudarle a comunicarse y compartir información sobre su hijo con los miembros de su equipo de atención, incluyendo médicos, enfermeras, terapeutas, servicios de emergencia, los proveedores de cuidado de relevo, los maestros, y cuidado de niños los proveedores. Un SPoC permite a las familias a compartir información sobre cómo cuidar de las necesidades de salud de sus hijos.

Mi plan compartido de la atención fue desarrollado por el Departamento de Salud en colaboración con sus socios, The New Jersey Chapter, American Academy of Pediatrics (NJAAP), the Statewide Parent Advocacy Network (SPAN), y Special Child Health County Case Management Units (SCHS CMU), y con contribuciones de los padres y jóvenes con necesidades especiales de salud.

Comportarse como un adulto saludable: Cómo defender su salud y atención médica

El propósito de esta guía es enseñar a los adultos jóvenes con discapacidades cómo convertirse en defensores de su propia salud y atención médica. La guía incluye actividades, hojas de trabajo y consejos para comunicarse de manera efectiva con los proveedores de atención médica, realizar un seguimiento de la información de salud personal y descubrir qué apoyos ayudarán a cada individuo a tomar las decisiones relacionadas con la salud que sean adecuadas para él o ella.

Roberson, K. (2010). Being a healthy adult: How to advocate for your health and health care.
New Brunswick, NJ: The Elizabeth M. Boggs Center on Developmental Disabilities.

http://rwjms.rutgers.edu/boggscenter/products/BeingaHealthyAdult.html

Train the Trainer: Transition/Transición (CC: English & Español)

The following archived webinars are geared toward various transition related topics for professionals or groups that are looking to present the topics.

Los siguientes seminarios web archivados están orientados a diversos temas relacionados con la transición para profesionales o grupos que buscan presentar los temas.

* Closed captions are available in both English and Spanish. Para subtítulos en español, hay que seleccionar el ícono o ruedita de configuración y cambiar “Subtitles/CC” de “English” a “Spanish.”

These webinar archives were retrieved from www.spanadvocacy.org

Intro to the Family Engagement in Systems Tools (FESAT) Webinar

Families can be important drivers of systems change, using their experiences and expert knowledge in partnership with professionals to ensure that all children receive health care in a well-functioning system. Family Voices, in partnership with experienced family leaders and professional partners from community, academic, public health, and pediatric settings, has developed a Family Engagement in Systems Toolkit for assessing and improving family engagement in child- and family-serving organizations.

In this webinar:

1. Learn about the various uses of the FESAT.
2. Preview the supporting set of resources in the FES Toolkit.
3. Learn how the FESAT could be used with your organizational partners to assess and improve family engagement in systems-level initiatives.

 

AMCHP and Family Voices 3-part webinar series, state Title V

AMCHP and Family Voices presents a 3-part webinar series to support state Title V programs to engage families across all five population health domains. Each webinar is one hour in length.

WEBINAR 1
Beyond CYSHCN: Engaging Women & Youth in Title V Programs and Activities
Wednesday, December 18, 2019
Listen to the recording and view the slides from the webinar below.
Recording (audio)
Slides

WEBINAR 2
Meet Families Where they Are: Strategies and Inclusive Formats to Engage Diverse and Medically Underserved Families
Wednesday, January 8, 2020
Recording
Slides

WEBINAR 3
Preparing Families to Participate
Wednesday, February 12, 2020

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of