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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! Protecting Health Information Privacy

2014-2015 F2F Data Report

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.

March 1, 2016
Medical Home - Building Upon the Improvement Model
February 18, 2016
Innovative ways to assess the views of people with intellectual or developmental disabilities regarding their health and health care.
February 18, 2016
Plan and conduct constructive meetings to debrief on recent open enrollment period.
February 11, 2016
Learn about the nationwide effort to identify children and youth eligible for Medicaid and CHIP and get them enrolled.
February 11, 2016
Sustainable financing strategies, including Medicaid, for community health workers.
February 10, 2016
Behavioral Health - Integrating Mental Health in Medical Home
February 9, 2016
Addresses increases and variations in deductibles and cost-sharing, other changes, and what's coming in the Health Insurance Exchange in 2017.
February 8, 2016
Review the findings of the Institute of Medicine's recently released report on prevalence of language and speech disorders among children who receive SSI for those conditions.
February 5, 2016
Current status of ABLE and what can be expected in the next 12 months.
February 4, 2016
Basic information needed to actively involve patient leaders in a medical practice.
February 3, 2016
Resources to help children and youth during emergencies and disasters when not under adult supervision.
February 2, 2016
Explore models that could address gaps in access, quality of services, and sustainability for individuals and families with genetic conditions.

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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

Read more about the outreach, assistance, training, and impact of F2Fs in this 4-page report.

Doctor with Patient looking at a medical recordNEW ACA BLOG: Protecting Health Information Privacy

There are new privacy tools on such as privacy manager, Do Not Track, and a new privacy notice.  Find out what they are, how they work, and how they will assist consumers maintain health privacy information and help them get the best health care plans for their family in this new blog.

Population Fact Sheets from the National Disability Navigator Resource Collaborative (NDNRC)


The NDNRC provides cross-disability information and support to Navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information when selecting and enrolling in insurance through the Affordable Care Act Marketplaces.  However, the materials provided by the NDNRC are full of useful info that can be used at anytime.  Included in each fact sheet are sections that provide a description of the health condition, types of providers that treat the condition, typical prescriptions, therapy needs, other needed medical services and supports, health insurance needs, and accommodations for meeting with a individual with that health condition. Check out these fact sheets:

  • What to Know When Assisting Children and Adults in the Autism Community online | pdf
  • What to Know When Assisting a Consumer with a Child with Special Health Care Needs (Authored by Family Voices) online | pdf
  • What to Know When Assisting a Consumer with Intellectual Disability online| pdf
  • What to Know When Assisting a Consumer with Mental Illness online | pdf
  • What to Know When Assisting a Consumer with Traumatic Brain Injury online | pdf


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.

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!