Polly Arango Mentoring Initiative Summary

Funded by private donations, the Polly Arango Mentoring Fund supported Family Voices State Affiliates (AK, IA, MN, NC) in preparing families from diverse cultural and linguistic backgrounds to join a new generation of family leaders that reflects the growing diverse populations within states and our nation, while building the leadership and advocacy of Family Voices’ State Affiliate Organizations (SAOs) at the state level.

  • Source: Family Voices

Tips for Title V Programs: Partnering with Families

A 2 page tip sheet providing suggestions for effective partnership between families and Title V programs.

  • Source: Family Voices

Zika: What Family Leaders Working In Public Health Should Know

Panel presentation on supportive and preventive measures available for families dealing with a diagnosis of Zika; what family leaders need to know to better serve families faced with the diagnosis; and the latest updates from CDC. Speakers: Dr. Georgina Peacock, MD, MPH, FAAP is the Division Director of the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities, part of the Center for Disease Control. Dr. Fernando Ysern, MD, FAAP, is President of the Puerto Rico American Academy of Pediatrics.Ms. Coralaidee Jimenez is a Family Representative for children with special health care needs at the Puerto Rico Department of Health (Representante de Familias Programa Niños con Necesidades Especiales de Salud). She is the mother of an 11-year-old boy with microcephaly, developmental delays, and other conditions.

  • Source: Family Voices

Partnering in the Title V Block Grant Process

Title V needs family involvement to strengthen the Block Grant.  In this webinar, a panel of family leaders from three states–California, Oklahoma, and Vermont–shared their organizations’ involvement in the Block Grant process and detail their paths to partnership with their state Title V, sharing tips and lessons learned along the way for building this important relationship.

  • Source: Family Voices

Tip Sheet: Lessons Learned from MCH and CSHCN Title V Directors

A 3-page document that provides highlights from the FiPPs (Families in Program and Policy) reports along with tips for success.

  • Source: Family Voices

Engagement of Family Leader Organizations in Non-CSHCN Initiatives

Family involvement is essential to the successful development and adoption of health-related programs that affect families. Family engagement is now being measured across MCH systems and not just within programs for children with special health care needs (CSHCN). Family organizations serving families of CSHCN are already actively engaged in partnerships around how to promote family engagement in health care beyond CSHCN populations. This webinar was a panel presentation of three Family to Family Health Information Centers (F2Fs) and Family Voices State Affiliate Organizations (FV SAOs) highlighting examples and lessons learned from their successful partnerships and collaborations on Non-CSHCN initiatives. Speakers include:  Malia Corde of New Jersey’s Statewide Parent Advocacy Network (SPAN) will highlight three projects, funded through the NJ Department of Health and NJ Department of Human Services, that focus on improving pregnancy outcomes and the prevention of birth defects and developmental disabilities. Amy Nienhuis of Family Connection in South Carolina will discuss elements of her organization’s state contract with the South Carolina Department of Health and Environmental Control that reach beyond CSHCN populations. Jane St. John and Susan Bird of Missouri Family to Family will highlight an evolution of partnerships with stakeholders including Missouri’s Early Childhood Comprehensive Systems and Maternal, Infant, and Early Childhood Home Visiting which have resulted in increased family involvement in several initiatives across the state.

  • Source: Family Voices
Resources:

Partnering with Your Child’s Provider

Tips for helping parents partner with their child’s health care provider, including pre-visit tips; tips for talking with the health care provider; tips for learning more; and tips for helping the provider help other families.

  • Source: Family Voices

Organizational Development: Race, Language, and Ethnicity Data Collection

Julie Lucero, PhD, MPH, presented on the collection of Race/Ethnicity and Language (REL) data. Collection of this data is important to tracking progress of health disparities across populations. Health disparities impact individual and family well-being throughout the United States by compounding and intersecting with traumatic life conditions such as the chronic strain of poverty and marginalization. The presentation included a brief history of health disparities and race/ethnicity categories; a description of why REL data are collected; and how to ask the questions. Facilitator: Trish Thomas, Family Voices; Speaker: Julie Lucero, PhD, MPH, Research Assistant Professor in the Department of Family and Community Medicine at the University of New Mexico (UNM) Health Sciences Center and the Associate Director of the Center for Participatory Research, and a senior fellow with the New Mexico Center for the Advancement of Research Engagement and Science on Health Disparities Center (NM CARES), a National Institute for Minority Health and Health Disparities funded center

  • Source: Family Voices
Resources:

You Are an Advocate

A 1-pager of tips to help you be an advocate for your child/youth with special health care needs.

  • Source: Family Voices
Resources:

F2Fs Moving Forward with Healthcare Reform

Family leaders shared resources and activities for helping families and professionals understand and navigate the ACA: Speakers: Jennifer Akers of Family Voices Indiana highlighted resources created by Family Voices of Indiana, including an online ACA guide, and information dissemination strategies; Debbie Gilbert and Sondra Gilbert of the Kentucky F2F, Kentucky Commission for Children with Special Health Care Needs, shared their experience serving as enrollment assistors, or Kynectors, for children and families. Faye Manaster, Family Voices of Illinois, shared information about their annual Update on Health Care Reform for Children with Special Needs conference, now in its 6th year. Beth Dworetzky of the Catalyst Center and Janis Guerney, Family Voices Policy Co-Director, shared any relevant trend updates and responded to  participating F2Fs (presenters and participants) about what’s going on for F2Fs and families related to health care reform.

  • Source: Family Voices

Complete your gift to help keep families at the center of children’s health care

I'm ready
Not today

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