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Family Voices Newsletters Sign-up

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  • 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! Helping Families of Children with Special Needs to Understand Deductibles

2014-2015 F2F Data Report

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.

June 8, 2016
Part 3 of a 3 part series focused on advancing health equity and care quality in the pediatric medical home.
May 31, 2016
Part 2 of a 3 part series focused on advancing health equity and care quality in the pediatric medical home
May 25, 2016
Why health is important to post-secondary education, employment and independent living and how to address this in the transition IEP.
May 12, 2016
Part 1 of a 3 part series focused on advancing health equity and care quality in the pediatric medical home.
May 12, 2016
Accelerating the use of evidence in health care practice, policy, and decision making
May 11, 2016
The Trust for America's Health, the American Public Health Association, Prevention Institute, and Public Health Institute are hosting the next installment in the Community Prevention and Multi-Sector Stakeholder Web Forum Series.
May 11, 2016
Sponsored by Community Catalyst.
May 10, 2016
This “Town Hall” Teleconference will feature presentations from two states who will discuss expanding access to effective programs for young children with ADHD.
May 6, 2016
This webinar will feature three expert fathers (one of whom has a child with special health care needs) who will share a summary of the research on this topic, as well as anecdotal experiences of dads.
May 6, 2016
Fostering the well-being of children before, during, and after disasters
May 5, 2016
An interactive format in which youth and family leaders, educators, law enforcement officials, and behavioral health professionals will discuss how communities can work together to improve access to behavioral health services and supports.
May 4, 2016
Overview of how to develop systems to assist states to implement person-centered planning requirements and concepts

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Adolescent girl in wheelchair with helper golden retrieverAPRIL ACA BLOG: Helping Families of Children with Special Needs to Understand Deductibles

One of the most confusing aspects for families of children with disabilities is the concept of deductibles and how that plays into cost-sharing.  Many parents will choose plans with lower deductibles, but this may mean there is also a level of fewer benefits, which could be particularly problematic for children with special health care needs.  Learn more about deductibles in this new blog.

MARCH ACA BLOG: What Families Need to Know about Changes in Special Enrollment Periods

Can i get coverage outside of open enrollment?There are now changes in circumstances which will no longer qualify for special enrollment. Special Enrollment Periods (SEPs) allow consumer to enroll in a Marketplace health insurance plan outside the open enrollment period that occurs near the end of each year.  Find out  what changes were made to SEPs, why this happened, and what families need to know in the latest ACA 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

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

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!