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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

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.

June 16, 2016
Series of calls on the Medicaid/CHIP managed care final rule that was released on April 25, 2016.
June 12, 2016
State approaches to providing "non-traditional" supportive services, including housing, employment support, education and training, and environmental modifications, through accountable care organizations, health homes, community health teams, accountable communities for health, and other value-based delivery system reforms.
June 9, 2016
Live Q&A session on Facebook on the topic of disability benefits.
June 8, 2016
This webinar will address the teenage brain’s potential for change; the elongation of adolescence as a developmental stage; and the implications of each for how we parent, educate, and understand young people.
June 8, 2016
Part 3 of a 3 part series focused on advancing health equity and care quality in the pediatric medical home.
June 2, 2016
Part 5 of a series of calls on the Medicaid/CHIP managed care final rule that was released on April 25, 2016.
May 31, 2016
Family Voices is looking for some good family story video-clips that can be used to inspire other families to take action and begin to prepare for emergencies. May 31 deadline for entry; up to 10 $100 prizes if video is used.
May 31, 2016
Part 2 of a 3 part series focused on advancing health equity and care quality in the pediatric medical home
May 27, 2016
Learn more about how these costs interfere with patients’ access to quality care.
May 26, 2016
A free webinar focused on helping you understand how to determine which ABLE program might be best for you and how to best prepare to open your ABLE account.
May 26, 2016
Information on the impacts of extreme heat, with a focus on certain populations, including children, athletes, the elderly, and outdoor workers.
May 26, 2016
This informational webinar on the new overtime rule will be presented at several times so that you may choose the one that best fits your schedule.

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NEW Video Contest - Family Experiences in a Disaster or Emergency!

Young girl with her dog after disaster in LouisianaDo you use your smart phone or iPad to take videos? 

Have you and your family experienced a disaster or emergency? 

Did your child’s health condition affect you or your child’s ability to manage or cope with the emergency or disaster?

If so, we would like to hear from you.  We want others to learn from you! Send us your home-made video in which you share your experiences about dealing with emergencies or disasters.

Accepted videos will earn $100!

DEADLINE is May 31, 2016!  Visit the Family Voices website to learn more.


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.

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!