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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! New Guidance Makes It Easier for Families of CSHCN to get Medical Records

2014-2015 F2F Data Report

2016 Family Leadership Meeting: Expanding our Reach, Impacting the Future

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.

September 29, 2016
Part of the Georgetown Center for Children and Families’s series on the new Medicaid/CHIP managed care final rule.
September 29, 2016
Intended for anyone who is currently serving, or wants to serve, on a decision-making group, including parents, self-advocates, service providers, administrators, and community members.
September 8, 2016
Part of the Georgetown Center for Children and Families’s series on the new Medicaid/CHIP managed care final rule.
August 5, 2016
Part of the Georgetown Center for Children and Families’s series on the new Medicaid/CHIP managed care final rule.
August 4, 2016
Presentations from representatives on behalf of four state ABLE programs in OH, TN, NE, and FL.
July 28, 2016
Highlights of the Center for Pan Asian Community Services and its work with immigrants and refugees in the AAPI community in Georgia.
July 28, 2016
Research on mental and physical health of caregivers, including that of Latinos and African Americans
July 28, 2016
Part of the series about the Medicaid managed care final rule
July 27, 2016
Learn ways to manage meetings with regulatory agencies to achieve desired outcomes.
July 27, 2016
This webinar is a continuation of the work that began with the Lucile Packard Foundation for Children’s Health national symposium, "Designing Systems That Work for Children with Complex Health Care Needs"
July 22, 2016
Practical strategies to enable community-based organizations (CBOs) to establish positive working relationships with physician groups, hospitals and health plans.
July 21, 2016
Using the Equity and Empowerment Lens, a tool used to improve planning, decision-making, and resource allocation leading to more racially equitable policies and programs.

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HIGHLIGHTS

Family Voices Awarded New 3-Year Cooperative Agreement

National Center for Family/Professional PartnershipsFamily Voices has been awarded a new three-year cooperative agreement from MCHB as the National Center for Family Professional Partnerships (NCFPP).  The new project period will be June 2016 through May 2019. The project will focus on supporting and developing family and youth leadership, particularly the leadership of racially and ethnically diverse families of CYSHCN. This agreement will promote the engagement of diverse families in meaningful ways in systems level activities and encourage the reduction of health disparities through family engagement.  The Statewide Parent Advocacy Network (SPAN), which serves as the Family-to-Family Health Information Centers (F2F) and Family Voices State Affiliate (FV SAO) in New Jersey, is partnering with Family Voices in this work, bringing their extensive expertise and experience in family and youth leadership training, especially for racially and ethnically diverse minority families.

Download the Project Abstract.


image of a medical recordJune ACA BLOG: New Guidance Makes It Easier for Families of Children with Special Needs to get Medical Records

Access to medical records helps families of children with special needs to better partner in health care decisions.  New guidance on HIPAA (Health Insurance Portability and Accountability Act) helps address some of the barriers parents have faced getting medical records such as lack of electronic access, sharing with other providers, etc... Learn more in this blog.


2014-2015 Family-to-Family Health Information Centers Data Report

2014-2015 F2F Data ReportData aggregated from reports submitted by all 51 F2Fs summarizing their work from June 1, 2014 through May 31, 2015 (FY2015) demonstrate their:
- Direct Support to 155,950 families and 74,225 professionals

- Estimated Overall Outreach to 928,225 Families and 350,960 Professionals

- Impacting 92% of families who are better able to partner with providers & navigate systems

This report also includes state by state charts listing F2F partnerships, methods of assistance, involvement in specific initiatives, and additional sources of funding.  Read more about the outreach, assistance, training, and impact of F2Fs in this 12-page report.


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.


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.


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!