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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! What Parents of Children with Disabilities Need to Know about Changes in the ACA

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.

July 20, 2016
A webinar on evidence-based programs, tools, and materials that can help clients with disabilities of all ages.
June 30, 2016
Learn about how different organizations, including an integrated health care system, an academic medical center, and a public health department, are implementing the National CLAS Standards.
June 29, 2016
Learn about new efforts to integrate care for people with Medicare and Medicaid, and how aging and disability organizations can participate.
June 24, 2016
A new webinar series designed to help health professionals, agencies and clinics address the rising rates of hepatitis and HIV co-infection in their communities.
June 23, 2016
This webinar, sponsored by Families USA, will highlight assisters who have used SEPs to reach unique populations, including the justice-involved population and immigrants.
June 23, 2016
examine the consumer information and communications aspects of the new comprehensive final rule governing managed care in Medicaid and the Children’s Health Insurance Program (CHIP).
June 23, 2016
This webinar will focus on promising practices, based in law, to address health equity issues through drug abuse treatment and overdose prevention, Medical-Legal Partnerships, and interventions in domestic violence and homelessness.
June 22, 2016
Learn about Ticket to Work and Work Incentives, frequently asked questions and where to find more information.
June 22, 2016
Overview of the new regulations and an analysis of relevant provisions, including enrollment, network adequacy, stakeholder engagement, beneficiary support system, and quality.
June 22, 2016
Explore the range of approaches to oral health integration that states are considering in the areas of 1) Medicaid benefit design and expansion; 2) practice-level oral health reforms; and 3) statewide delivery reform models.
June 21, 2016
Report on an analysis of National Outcome Measure (NOMs) data about individual HTI participants and their outcomes.
June 20, 2016
The Catalyst Center has created a tutorial to help understand and address health care coverage inequities among vulnerable subgroups of CSHCN

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Family Voices Awarded New 3-Year Cooperative Agreement

National Center for Family/Professional PartnershipsFamily Voices has been awarded a new three-year cooperative agreement from MCHB as the National Center for Family Professional Partnerships (NCFPP).  The new project period will be June 2016 through May 2019. The project will focus on supporting and developing family and youth leadership, particularly the leadership of racially and ethnically diverse families of CYSHCN. This agreement will promote the engagement of diverse families in meaningful ways in systems level activities and encourage the reduction of health disparities through family engagement.  The Statewide Parent Advocacy Network (SPAN), which serves as the Family-to-Family Health Information Centers (F2F) and Family Voices State Affiliate (FV SAO) in New Jersey, is partnering with Family Voices in this work, bringing their extensive expertise and experience in family and youth leadership training, especially for racially and ethnically diverse minority families.

Download the Project Abstract.

Medical PencilMAY ACA BLOG: What Parents of Children with Disabilities Need to Know about Changes in the ACA

The Department of Health and Human Services issued some new rules for health plans sold in the federal exchange next year.  This is good news, as these changes will give consumers more information about health plans and make it easier to compare plans.  Learn more about how these changes apply to the the 38 states using the federal exchange.

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!