Framework for Assessing Family Engagement

The Family Voices project, Framework for Assessing Family Engagement, funded by a grant from the Lucile Packard Foundation for Children’s Health, Palo Alto, California, investigated strategies of state and federal agencies, as well as public and private organizations can implement for ensuring, enhancing, and supporting family engagement in the systems of care on which all children, including children and youth with special healthcare needs (CYSHCN), depend. Drawing on a literature review and key information interviews with families and professionals, the goal of the project was to define a framework and key criteria of effective family engagement in systems-level activities as a first step in developing a Family Engagement in Healthcare Systems Assessment Tool and Toolkit to help groups assess and improve the engagement of families in healthcare programs and policy.

  • Source: Family Voices

Family Resources on Zika

A collection of online resources with links to valuable information for families about the Zika virus.

  • Source: Family Voices

Working With Adult Allies

Savannah Logsdon-Breakstone from the Autistic Self-Advocacy Network explores how youth self-advocates and adult allies can collaborate effectively. What works best? What are the pitfalls to avoid? What makes a good ally? What can you do if things go wrong? Learn all this and more, from an advocate who has been on both sides of the table.

  • Source: Family Voices
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Engaging Diverse Families in Leadership for Systems Change

Family organizations, professionals, and state and local agencies are increasingly seeking to engage diverse families in leadership to improve systems. This webinar will provide tools and strategies to: assess and improve agency and staff readiness; identify, recruit, prepare, engage and support diverse family leaders in meaningful leadership roles; recognize family leader contributions; become an organization more focused on and capable of supporting diverse leadership. The webinar was hosted by the National Center for Family Professional Partnerships (NCFPP) and presented by Diana Autin of the Statewide Parent Advocacy Network (SPAN).

  • Source: Family Voices
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Sharing Your Story for a Public Policy Purpose

Reid Caplan from the Autistic Self Advocacy Network explains how to use personal stories for advocacy in different situations. What is a public comment period? How can you make sure that the people in government hear your concerns? As advocates, we have a lot of important experience and perspective to share. Learn more about new ways to be heard!

  • Source: Family Voices
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Family Leaders Engaging with Title V Programs and the Block Grant Process

Hosted by NCFPP, in partnership with the Association for Maternal and Child Health Programs (AMCHP). A panel of 3 F2F family leaders (Allison Gray, CA; Natilie Wooldridge, AR; Nanfi Lubogo, CT) shared their experiences and strategies in engaging with their state Title V programs.

NCFPP hosted a follow-up discussion on April 12, 2017. Materials distributed included examples of partnering with Title V shared by SPAN (NJ F2F/SAO)

  • Source: Family Voices

Participating in Advisory Groups

Savannah Logsdon-Breakstone from the Autistic Self Advocacy Network shares what youth self-advocates need to know in order to serve on boards and other groups. What can youth expect? How can I participate in meetings? Savannah shares tips and strategies to help youth leaders get involved and get the most out of these experiences.

  • Source: Family Voices
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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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Title V Block Grant Information Sharing

A PowerPoint providing a comprehensive overview of the Maternal and Child Health Title V Block Grant program including history, authorization, annual reporting and performance measurement, federal guidance around family engagement, required public input, and the federal review process.

  • Source: Family Voices

Leading by Convening

Guidelines for Leading by Convening, based on an operational style as a hybrid of top-down and bottom-up leadership designs. It requires that leaders, regardless of title, accept the value of bringing groups with authority and groups with influence together in a shared leadership strategy. This style supports authentic engagement. Also included is an infographic which outlines the top ten benefits of the training.

  • 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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