Tip Sheet: Title V 5-Year Needs Assessment (2015)

A 2-page fact sheet that describes the 5 Year Needs Assessment, a process that states use to set goals for Title V services for women and children, including children with special health care needs. Specifically highlighted are strategies to involve families in this process.

  • 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

Best Practices in Cultural Competence

An overview of the Promising Practices in Cultural Competence project, including selection of exemplars and examples of practices.

  • Source: Family Voices

Family-Centered Care Assessment Tool (FCCA)

The FCCA-F is a quality measurement questionnaire developed by Family Voices through an extensive collaborative process involving families, health researchers, pediatric providers and MCH professionals. The 24-question assessment measures a family caregiver’s perception of the family-centeredness of care that their child receives from a health care provider. The FCCA-F is validated for use in outpatient care settings, with families of children with special health care needs. It can be used with all families who have an established relationship with the health care provider; it is not appropriate for evaluating a single visit with a provider.

  • Source: Family Voices

Health Care Acronyms

A list of the most common health care acronyms, especially those associated with the Affordable Care Act.

  • Source: Family Voices
Resources:

Alphabet Soup Glossary of Health Care Terms

This glossary provides definitions of health care terms especially important for families with children and youth with special health care needs.

  • 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