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.


Leadership in Family and Professional Partnerships (LFPP): What It Is and How You Can Benefit

Learn about the work of the Family Voices Leadership in Family and Professional Partnerships (LFPP) program and how to access its resources and offerings!

The LFPP is funded by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) as a cooperative agreement from June 2019 to May 2022. This webinar shares details on the LFPP focus areas of:

    • Assistance and Training on Family Engagement to Family-to-Family Health Information Centers (F2Fs), Title V programs, and other CYSHCN stakeholders on family engagement at all levels of health care, with an emphasis on underserved communities. F2Fs will receive assistance and training to support their organizational capacity, overall program goals, and reporting.
    • Partnership and Collaboration with organizations serving CYSHCN and diverse, medically underserved communities to identify best practices, materials and resources related to family engagement and to identify opportunities for collaboration.
    • National Dissemination to CYSHCN stakeholders on family engagement resources, best practices, and emerging state and federal policy trends impacting CYSHCN and their families.

Protected: Serving on Groups Resources


Building Partnerships and Educating Families and Professionals about Supported Decision-Making Webinar

In this webinar from Family Voices and Quality Trust’s National Resource Center for Supported Decision-Making, you’ll hear from three Family-to-Family Health Information Centers on how they are helping to educate families, health care providers, legal professionals, and others about Supported Decision-Making (SDM) as an alternative option to guardianship for transition age youth.

There will also be time for YOU to share strategies and educational materials you have used to help families use supported decision-making.


Elizabeth Hecht, co-director of Family Voices of Wisconsin and Outreach Specialist for Public Policy, Waismann Center, educates families and medical providers about Supported Decision-Making and serves on a Working Interdisciplinary Network of Guardianship Stakeholders (WINGS) and a Wisconsin Community of Practice on SDM.

Janna Murrell, Assistant Executive Director of Raising Special Kids, leads collaborative efforts with Arizona’s Division of Developmental Disabilities to create a training for parents and professionals: “Legal Options, Turning 18? What’s Next.” As the parent of a young man with cerebral palsy, she has benefited from parent to parent support to increase her knowledge of options for individuals transitioning to adult lives.

Carrie Woodcock is the Executive Director, Maine Parent Federation, and Project Director for their Supported Decision-Making program, which helps youth and families explore alternative options to guardianship, as well as options within guardianship.

Morgan Whitlatch, Legal Director for Quality Trust for Individuals with Disabilities and Lead Project Director of the National Resource Center for Supported Decision-Making, will answer questions about their center and promising educational approaches and strategies to advance Supported Decision-Making.


Family/Professional Partnerships

A partnership is a relationship between individuals or groups that is characterized by mutual cooperation and responsibility for the achievement of a specified goal. Partnerships have been used as successful models in many disciplines. In health care, evidence has shown that strong doctor-patient relationships improve patient and family health outcomes. Key to such partnerships are the following principles:

  • Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.
  • Everyone respects the skills and expertise brought to the relationship.
  • Trust is acknowledged as fundamental.
  • Communication and information sharing are open and objective.
  • Participants make decisions together.
  • There is a willingness to negotiate.

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

Liderazgo con Convocatoria: Plan Para un Compromiso Auténtico (Leading by Convening Guidelines)

En el desarrollo de este marco, nos dimos cuenta de que el Liderazgo con Convocatoria se trata en compartir nuestra experiencia en la creación de “asociaciones de aprendizaje.” A través de la Oficina de Inversión del Programa de Educación Especial (OSEP por sus siglas en ingles) en la Asociación IDEA, hemos encontrado que las relaciones están infravaloradas como una inversión estratégica. Con el tiempo, comenzamos a hablar sobre el valor de las relaciones como el “Camino a la Asociación”. Esta forma abreviada ya no se refiere a la Asociación IDEA, sino más bien a la estrategia de asociación que construye conexiones y fomenta el compromiso auténtico que se logra a través del liderazgo con convocatoria.

NCFPP Brochure

This brochure describes the work of the National Center for Family/Professional Partnerships in its goal to reduce health care disparities of families of CYSHCN by making health care more family-centered through the development and support of family and youth leadership, particularly of those from diverse backgrounds, at the systems or policy-making level.

  • 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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