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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 Blog! How the New Rule on Habilitative Services Affects Children with Special Needs

2013-2014 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.

October 14, 2015
Sponsored by CMS
October 13, 2015
Sponsored by Youth Transition Collaborative, Got Transition, and the National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
October 8, 2015
Hosted by National Information and Referral (I&R) Center
October 8, 2015
Sponsored by the Centers for Medicare and Medicaid Services (CMS)
October 8, 2015
The Center on Budget and Policy Priorities will be hosting these webinars as part of its “Beyond the Basics” series. Topics include the renewal process, an overview of plan design, and how to determine household size and composition.
October 7, 2015
Presented by CMS
October 6, 2015
The Office of Minority Health Resource Center of the US Department of Health and Human Services is presenting a 3-part webinar series designed for community-based, faith-based, and other organizations that want to learn the basics of creating successful federal grant applications.
October 1, 2015
Sponsored by Families USA
September 25, 2015
Confronting and Addressing the “Isms”
September 17, 2015
Sustaining the Momentum: Incorporating Genetics in the Management of Children in the Primary Care Office
September 17, 2015
Learn more about evidence-based maternal, infant, and early childhood home visiting—and how it can improve birth outcomes and impact infant mortality.
September 15, 2015
Patient and family engagement is associated with fewer adverse events, lower health care costs, decreased use of services, better patient self-management, and higher patient-satisfaction scores. On this webinar, results from a research survey will be discussed and two hospitals that excel in patient-and-family-engagement practices will be highlighted.

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Open Enrollment Begins Soon

November 1, 2015 marks the start of the next open enrollment period under the Affordable Care Act.  If you are an assister who helps consumers understand their options or if you are a family member looking for more information, resources are available from the Centers for Medicare and Medicaid as part of its its From Coverage to Care (C2C) initiative:

  • Enrollment Toolkit Enrollment Toolkit: Helping Consumers Choose the Health Plan That's Right For Themoffers advice for assisters on how to help consumers choose the best plan for themselves and their families. It addresses what consumers need to know before choosing and enrolling in a plan, such as the value of health insurance, the importance of understanding key health insurance terms, and an explanation of how to discuss updating information that might affect consumers’ coverage or financial assistance on

  • A Roadmap to Better Care and a Healthier You, available as a downloadable and customizable document in English, arabic, Chinese, Haitian Creole, Korean, Russian, Spanish, Vietnamese, and Tribal Version, provides a step-by-step approach to getting healthy and getting quality health care.  Steps include:
    • From Coverage to Care - A Roadmap to Better Care and a Healthier YouStep 1: Put your health first: Why are prevention and health coverage important?
    • Step 2: Understand your health coverage: What words should I know? How much will it cost me to get care?
    • Step 3: Know where to go for care: Where do I go when I am sick? What is the difference between the emergency department and primary care?
    • Step 4: Find a provider: How do I find a provider that is right for me? What if I am
      assigned a provider?
    • Step 5: Make an appointment: What information do I need and what questions should I ask when making an appointment?
    • Step 6: Be prepared for the visit: What should I bring to the appointment? What questions should I ask during the visit?
    • Step 7: Decide if the provider is right for you: Is this a provider I can trust and work with? If not, what do I do?
    • Step 8: Next steps after your appointment: What do I do when I get home? How do I maintain my health?
    • Resources: Glossary and Links

Mom and son playing the drumsNEW ACA BLOG: How the New Rule on Habilitative Services Affects Children with Special Needs

The federal government issued a new rule in February regarding the Essential Health Benefits (EHBs) that must be included in all individual and small-group health plans sold in or outside of ACA Exchanges. This blog discusses how this rule may lead to improved “habilitative” services for children with disabilities.

Visit this blog written by Lauren Agoratus of SPAN of New Jersey.

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!

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.