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Family Voices Newsletters Sign-up

Enter your email address below to subscribe to any/all of the following:

  • Washington DC Update, a weekly e-digest of timely and relevant policy issues
  • Friday's Child, a quarterly e-newsletter of news & resources on such topics as leadership, mentoring, and partnerships
  • Resource Email Blasts, a monthly links digest of new resources for families of CYSHCN
  • Bright Futures Family Matters, a newsletter for families and professionals about news, information, and activities in the maternal and child health community

Partnering Materials_Jan2014.jpgPartnering Materials
We have updated these popular publications. Partnering with Your Child's Provider provides tips for caregivers on preparing for appointments, meeting with their child's doctor, and follow-up activity. Partnering with Your Child's Health Plan provides tips to help family member meet with their child's health plan to discuss plan policies for CYSHCN and how partnering with families can make a difference. A family story is highlighted.

Learn More about Family-to-Family Health Information Centers

Watch a video about Family-to-Family Health Information Centers

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U40MC00149. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government

Quick Links

New Blog! How Health Care is Funded: What Families Need to Know

New Report! 2013-2014 F2F Data Report

New Infusion Tip Sheet! Structured Listening: How Listening Helps Build Respectful Relationships

The Power of Partnerships: Materials, Photos, and more from the 2014 Family Voices Leadership Meeting

2014 Report on the Activities & Accomplishments of Family-to-Family Health Information Centers

ACA Tip Sheets

Request to Use Family-Centered Care Assessment

ACA Resource Center

Friday's Child

Family-to-Family Health Information Center Brochure

NCFPP Brochure

News & Happenings

Tell us about an upcoming event you would like to have posted in this column.

April 30, 2015
This webinar addresses emerging issues in the field, for example: applying trauma-informed care principles when working with people with intellectual/developmental disabilities (I/DD), assisting crime victims with complex communication needs, and equipping people with disabilities to tell their stories and provide peer advocacy to overcome the secrecy and shame around victimization.
April 22, 2015
This webinar will showcase innovative models of cross-system care coordination through family engagement and partnership across clinical, public health, social service, and policy organizations.
April 21, 2015
This webinar will highlight real world examples of successful programs that address Lynch syndrome, describe available screening programs and other resources related to Lynch syndrome and provide patient perspectives on the importance of identifying individuals and families with Lynch syndrome.
April 16, 2015
Learn more about a novel communication tool, Text4baby, which offers information and resources during pregnancy and the first year of a baby's life.
April 9, 2015
April 9, 2015
Designed to support peer-to-peer professional development by sharing our experiences (both personally and professionally) to support joint problem solving
April 8, 2015
Part 1 of a 7 part webinar series sponsored by the New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services.
April 2, 2015
This webinar will present a discussion about real risks, personal experiences, and ways families of children with genetic conditions or special health care needs can be more prepared.

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HIGHLIGHTS

Elements of Family-Centered CareNew Journal Article on the Family-Centered Care Assessment Tool

The article, Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool, has recently been published online in the Maternal and Child Health Journal.  This study describes the process that  yielded a robust and psychometrically sound instrument for which there has been substantial interest from health care providers, researchers, and family groups. The FCCA provides an important alternative to existing measures of families’ experiences of health care, including the CAHPS, which does not address the full range of topical areas deemed important to families, and the MHFI, which lacks the rigorous psychometric evaluation of the FCCA. The findings from this study also provide compelling evidence of the value of families taking substantive roles as researchers in the development of quality measures. The high level of validity of the family-created questions in this study indicates how consistent the concepts in the developed questions are with the expectations of families across all demographic groups. This model of partnership in research, with consumers themselves in the lead, provides an important model for future quality measure development.

Learn more about the FCCA, including requesting access to use the tool here.

April 2015 ACA Blog: How Health Care is Funded: What Families Need to Know

A photo of a stethescope on top of a pile of dollar billsMost Americans do not realize that their health care is subsidized.  This lack of understanding has led to a basic misperception on how various health care plans are funded and unnecessary stigma associated with some plans.  This blog describes how, through employer-subsidized plans, the marketplace plans, and public programs, almost everyone in the US gets help to pay for health care. Read the blog here.


2013 - 2014 F2F Data Report

2013-2014 F2F HIC Data ReportThis 4-page report provides aggregated data on the activities of Family-to-Family Health Information Centers across the country from June 1, 2013 through May 31, 2014.  Data includes families and professionals served, one-to-one assistance, trainings, information dissemination, impact on families, partnership activities, and self-reported impact on policies and programs.

 


Infusion Tip Sheets: Cultural and Linguistic Competence

Infusion: Diversity & Cultural Competence

Family Voices strives to infuse cultural and linguistic competence throughout the organization to meet the needs of all families.  In this tip sheet, we provide strategies to help build cross-cultural relationships and help you consider the "individual vs. community" approach.


What Families Need to Know about
the Affordable Care Act (ACA)

Affordable Care Act ResourcesWhat's happening with the healthcare exchange in your state?  What's a navigator?  Will your state expand Medicaid?  Looking to learn more about the ACA?  Visit our resource page and sign up for our weekly news brief, Washington Update!


Family-Centered Care Assessment

Mother with baby at the doctor's office

Did you know that family-centered care can improve patient and family outcomes, increase satisfaction, decrease health care costs, and lead to more effective use of health care resources? You can learn more about what makes health care family-centered by using the Family Voices Family-Centered Care Assessment tool, a 24-question tool to measure family centeredness of provider care based on ideas created by families themselves.