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Family Voices Newsletters Sign-up

Enter your email address below to subscribe to Washington DC Update, a free weekly e-digest of timely and relevant policy issues and/or Friday's Child, a bi-monthly e-newsletter of news & resources on such topics as leadership, mentoring, and partnerships.


2012-2013_F2FDataReport_01-17-2014-1.jpg2012-2013 F2F Data Report
A one-page report that provides highlights of data reported by F2F HICs in 2012-2013 demonstrating the value and impact in helping families of CSHCN. Data includes counts of families and professionals assisted, kinds of information provided, ratings of partnership activity. Download this report.

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

Quick Links

New! ACA & CSHCN blog post: Losing Health Coverage due to Documentation Discrepancies

The Power of Partnerships: Materials, Photos, and more from the 2014 Family Voices Leadership Meeting

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

2012-2013 F2F Data Report

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 11, 2014
This free webinar will review a new comprehensive online guide that will serve as a central repository for pediatric-related disaster and emergency health information.
September 2, 2014
New England Children with Genetic Disorders and Health Reform, Information and Recommendations for State Policymakers
August 28, 2014
This webinar will outline why policymakers may want to increase the diversity of their state’s health care workforce and highlight policy strategies available to states.
August 26, 2014
HRSA currently seeking comments on Title V Maternal and Child Health Services Block Grant to States Program: Guidance and Forms for the Title V Application/Annual Report
August 26, 2014
This webinar addresses strategies for meeting the cross-system needs of young people with mental health conditions in the transition years
August 15, 2014
Share your unique insights on topics of particular interest to Social Security early in the process and directly with policy makers to help guide policies.
August 7, 2014
Application for family scholars and mentors to participate in AMCHP’s Family Scholars Program to attend the 2015 AMCHP Annual Conference.
August 6, 2014
Learn about the physical, psychological and social aspects of Sickle Cell Disease as well as treatments and outcomes in this free webinar.

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HIGHLIGHTS

ACA: Losing Health Coverage due to Documentation Discrepancies

Mother with a sick childOver 300,000 individuals are at risk of losing health care coverage because of documentation discrepancies in their applications. Letters went out on August 12, 2014 to these individuals. Families only have until 9/5/14 to supply the missing information or they will lose coverage, or lose access to federal financial help to pay for it. Families and groups working with them can find out how to address this issue by following these tips in this month's blog by Lauren Agoratus.


ACA: What is Churn?

In this month's ACA blog,  Lauren Agoratus (SPAN of NJ) defines the term "churn" as moving from health plan to health plan based on changes in eligibility.  If families of children with special health care needs have a change in income or life circumstances, such as getting or losing a job and insurance that goes with it, they and their child may lose or gain eligibility for different health care plans. Churning can cause disruption in health care coverage.  Lauren's blog discusses tips on how to reduce churning.

As My World Churns

Lauren is the parent of a child with multiple disabilities and also serves as the NJ Coordinator for Family Voices and the southern coordinator in her state's Family-to-Family Health Information Center. Please join the conversation. Share your knowledge of family experiences in your state. Share your perspectives and expertise.


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!


2014 Activities & Accomplishments of Family-to-Family Health Information  Centers

2014 F2F HIC Activities & AccomplishmentsThis 68-page report summarizes the critical work accomplished by F2F HICs across the country in helping families of CSHCN during FY2013.  Included in this report are data on CSHCN, F2F HIC outreach, assistance, and training to help families of CSHCN and the professionals who serve them, the impact of such work with families, state by state pages highlighting an F2F activity and story from a family in that state, as well as charts of data indicating F2F partnerships, involvement in specific initiatives, methods of assistance, and funding sources that contribute to the work of each F2F.

Download this report or view it online.


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.


2104 Family Voices Family Leadership Meeting: The Power of Partnerships

2014FV-Meeting-139.jpgThis 3-day event in Washington, DC, brought together an energetic group of family leaders from FV State Affiliate Organizations and Family-to-Family Health Information Centers to share their knowledge, experiences, and best practices in helping families of CYSHCN. Family leaders were joined by a stellar cast of national experts to both gain a national perspective and provide the family perspective on children's issues, the disability landscape, upcoming issues in health care, emerging issues and more!  Learn more about the meeting, the Family Voices legislative reception, download materials, and check out the photo gallery on the Family Voices website.