Individuals with Disabilities & Families of Children with Special Health Care Needs, Pre/Post Disaster

Presented by the Family Liaisons of the Friends of the National Center on Birth Defects and Developmental Disabilities (NCBDDD), this webinar discusses the importance of emergency preparedness to the disability community; how families with CYSHCN can prepare for various types of disasters; and some practices that may be implemented post disaster to mitigate trauma to the family and damage to the disability community.

  • Source: Family Voices

Project ECHO – Building Community Online

Project ECHO (Extension for Community Healthcare Outcomes) is an evidence-based, peer-to-peer learning model that has proven successful worldwide and across fields of healthcare, assistive technology, and education. Lisa Rossignol shares how Parents Reaching Out (PRO in NM) plans to support diverse trained families using ECHO, as well as potential uses of ECHO to support family organizations as a follow up to Serving on Groups Train-the-Trainer regional workshops, to provide further support to trainers, and to facilitate connections among the trained family organizations who will be training diverse families. This webinar is an introduction to Project ECHO components and provides examples of current “clinics” working with families and strategies to adapt the Project ECHO model to meet the organization’s needs.

  • Source: NC
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Grant Writing Prep – Tips for Securing Collaboration Commitments and Introduction to Logic Models

This recorded resource focuses on 2 topics relevant to those writing grant applications, particularly for Family-to-Family Health Information Center funding opportunities: Diana Autin from SPAN (NJ F2F and FV SAO) shares information on strategies and forms that SPAN has used to secure collaboration commitments from state partners; Carrie Fisher, a member of the NCFPP external evaluation team (Institute for Community Health), gives a brief introduction to logic models and ways to approach them.

  • Source: National Center for Family/Professional Partnerships

Asociándose con el proveedor de su hijo (Partnering with your child’s provider)

COMO EL MAS CONSISTENTE CUIDADOR DE SU HIJO, usted conoce a su niño/joven con necesidades especiales del cuidado de salud (CYSHCN – Children Youth Special Health Care Needs) como nadie más y quiere asegurarse que las necesidades del cuidado de su salud se cumplan. Usted necesita compartir todo lo que sabe con los proveedores que tratan a su hijo. Infórmeles si algo no está bien con él y de qué manera responde al tratamiento o a los medicamentos.

Usted puede desarrollar sociedades con los doctores y otros proveedores. Estas sociedades ayudarán a que su hijo reciba el mejor cuidado de salud. Empiece con una comunicación clara entre usted y su proveedor y asegúrese en compartir sus diferencias culturales para que no se conviertan después en barreras para el acceso a los servicios. Los consejos siguientes lo ayudaran a prepararse para su visita médica, hablar con el proveedor de su hijo y aprender más sobre esta visita.

  • Source: Family Voices

Leadership is a Journey: A Series for Youth Self-Advocates

National Center for Family/Professional Partnerships (NCFPP) in collaboration with the Autistic Self-Advocacy Network, Kids As Self-Advocates, and Youth MOVE, is pleased to offer a webinar series that supports the identification of leadership as a journey and support understanding and learning in key leadership development areas.

  • Webinar 1 & 2: Knowing Yourself as a Leader: Join us in the first of a series of short leadership development sessions. These first sessions explore how personal reflection and self-assessment helps each of us increase our understanding of our personal leadership style. We provide examples of reflection and assessment activities and include personal experiences from advocates for youth.
  • Webinar 3 & 4: What is my Culture?  What are my Values?: Each of us has a personal leadership style and leadership journey. This is shaped by personal values and culture. The next sessions in the leadership journey series focus on defining culture and values and how each connects to leadership. As we reflect on our own culture and leadership, we discuss how to engage in reaching health equity and building inclusive communities. Join us in this session for learning, reflection activities, and discussion.
  • Webinar 5: Cultural Perspectives on Self-Care in Leadership: How do you create an environment that is supportive of each person’s values and cultural perspectives on self-care? The purpose of this session is to explore person-driven approaches to self-care. We also share concrete and inclusive practices that emerging young leaders can adopt that embrace diverse perspectives and collective approaches to community and self-care.
  • Source: Family Voices

Support for Family Leadership Development in U.S. Territories

Through funding provided by the Maternal and Child Health Bureau, the Family Voices National Center for Family Professional Partnerships (NCFPP) is supporting the expansion of opportunities for families of children with special health needs (CSHCN) in Puerto Rico, the U.S. Virgin Islands, American Samoa, and other territories affected by the Zika virus, to be better informed and able to participate in their child’s health care. This project provides peer support, training, resources, and technical assistance to aid the development of family-led organizations to help families gain valuable information and play a critical role in their child and families’ health care.

  • Source: Family Voices

Top 10 Reasons to Promote Partnerships between Family-to-Family Health Information Centers and Title V Block Grant Programs

Title V Maternal and Child Health Block Grant programs are in every state, the District of Columbia (DC), and jurisdiction. These programs promote the health and well-being of the nation’s mothers, children and families, including children and youth with special health care needs (CYSHCN). There are many benefits to strong partnerships between F2Fs and State Title V programs in the development of the Maternal and Child Health Block Grant. This document gives ten of the most important.

  • Source: Family Voices

Building Partnership Skills: NCFPP Workshops

Family Voices National Center for Family Professional Partnerships (NCFPP), in partnership with the Statewide Parent Advocacy Network (SPAN), offers a training series targeted at building partnership skills for systems-level collaboration of group leaders, such as Title V Directors and others, and diverse family leaders.

  • Source: Family Voices

Annual National Family-to-Family-Health Information Center (F2F) Aggregated Data Reports

The Leadership in Family Professional Partnerships (LFPP) annually creates a national report with data aggregated from all (currently 59) Family-to-Family Health Information Centers (F2Fs) summarizing their work from the recent project year period.  Each report gives an overview and examples of the work and impact of F2Fs for that year.

  • Source: Family Voices

Family Wisdom Overview

Through the Family Wisdom project, Family Voices partners with diverse communities, honoring and engaging families’ and communities’ wisdom and strength in health-related services and research to reduce disparities, discrimination, oppression, and stigma.

  • Source: Family Voices

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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.

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