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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! How The ACA is Helping Children with Special Needs and Their Families

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

Family-to-Family Health Information Center Brochure

News & Happenings

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

October 13, 2016
This webinar will focus on the Community Engagement and Cultural Diversity Program at the Miami Clinical and Translational Science Institute (CTSI) and the services it provides to bring cultural and linguistic assistance to the Hispanic/Latino community in Florida.
October 12, 2016
Sponsored by Systems for Action National Coordinating Center
October 6, 2016
Part IV will explain who can qualify for an exemption from the individual shared responsibility payment, and will cover how to calculate the penalty for people who don’t maintain health coverage or qualify for an exemption.
October 4, 2016
Part III will provide an overview of health plan design—including cost-sharing charges in marketplace plans, eligibility for cost-sharing reductions, and how cost-sharing reductions affect costs for consumers
September 29, 2016
Part II will detail the rules used to determine household size and will explain what counts as income when determining eligibility for premium tax credits and Medicaid.
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 28, 2016
This webinar will feature how two organizations, United Way of Central Jersey and Youth Empowered Solutions (YES!), are planning to address social determinants of oral health in their communities.
September 28, 2016
This webinar will highlight a successful CBO-ACO partnership in Maine that resulted in better care, lower costs and opportunities for diversifying the CBO funding stream.
September 27, 2016
Part I will provide a detailed discussion of eligibility for premium tax credits—including how offers of employer-sponsored insurance can affect eligibility—as well as how premium tax credits are calculated.
September 27, 2016
Sponsored by the Family Voices National Center for Family/Professional Partnerships (NCFPP) and the Family Liaisons of the Friends of NCBDDD in Support of the National Center on Birth Defects and Developmental Disabilities
September 22, 2016
Part 1 of webinar series. (Part 2--April 28, 2017; Part 3--July 21, 2017)

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September ACA BLOG: How The ACA is Helping Children with Special Needs and Their Families

A Georgetown University Health Policy Institute brief reports that when parents have coverage, their children will too.

The Affordable Care Act (ACA) has helped both children with disabilities and their parents. Two reports from the Urban Institute (see Resources) highlight how two generations are benefiting from healthcare coverage under the ACA. Learn more in this blog.

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.

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.