February 2013

February 09, 2013

February 8, 2013: Download a Printable Version here.

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Feature Story: F2F Funding: How Did it Happen?

Family Leadership in the States: When F2Fs Collaborate with Title V, Everybody—Especially Families—Benefits!

From Our Partners:

News You Can Use

What's New with Family Voices:


F2F HICs and Uncle SamIt’s great that Congress provided $5 million for Family-to-Family Health Centers (F2Fs) to keep them going for another year. But how did this funding get included in the American Taxpayer Relief Act (ATRA) during the closing hours of 2012? And what on earth is a legislative “vehicle”—one of those little trains that shuttles Members of Congress between their offices and the Capitol? More importantly, what do we need to do to get F2F funding approved beyond this fiscal year?

To answer the last question first: if we want to get another extension of funding, family leaders must continue to educate and build relationships with Members of Congress—to replicate the teamwork, perseverance, and passion that resulted in the ATRA provision.

The story of this year’s F2F funding extension perfectly illustrates the elements necessary for legislative success. It involved many players, collaborating together, with the coordination of an entity like Family Voices.

One essential element is having a congressional “champion”—a Member of Congress willing to take the lead in promoting necessary legislation. Securing such a champion usually requires a pre-existing relationship between that Member of Congress and a constituent committed to the issue. In this case, that relationship existed between NJ’s Statewide Parent Advocacy Network (SPAN) and two Members of Congress—Senator Robert Menendez (D-NJ) and Representative Frank Pallone (D-NJ)—who introduced bills to extend F2F funding.

Through their work to promote family-centered, culturally competent, and linguistically appropriate care and medical homes for CSHCN, FHICs [Family-to-Family Health Information Centers] are contributing to improvements in the quality of health care. By helping families to provide a consumer perspective on program and policy issues, FHICs enable states to develop more effective ways to assist families with CSHCN.
Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees, RTI International, 2006

SPAN had carefully cultivated these relationships over the years with ongoing communication about a variety of issues and projects, such as the important work of its F2F in supporting families of high priority to them, including immigrant families. SPAN also shared a series of family stories showing why health care reform was essential for children with special healthcare needs, and how their families depended on the help of NJ’s F2F to make sure they received its benefits.

The next step in the process involved building the additional congressional support (ideally, bipartisan) needed to move legislation forward. This often comes in the form of co-sponsorship. Family Voices individual and organizational members and State Affiliates educated their Members of Congress about the F2Fs in their states, providing data to justify their support of a program, and stories about constituents aided by F2Fs. The Family Voices policy staff helped ensure that the state leaders’ efforts would be aimed at the Members of Congress best-positioned to advance the legislation.

Organizational partners, including the staff and members of the Association of Maternal and Child Health Programs and the American Academy of Pediatrics, were supportive of efforts to secure a funding extension for F2Fs. Over twenty other disability and child health organizations also expressed their support in a letter to Sen. Menendez and Rep. Pallone.

All of this preparation met opportunity when Congress was considering a piece of legislation, ATRA, authored in part by the committee of jurisdiction for the F2F funding. This legislation was sufficiently relevant and large that it could serve as a “vehicle” for the F2F provision to ride through Congress (thus the term “legislative vehicle”). Family Voices and its congressional supporters successfully argued that the F2F provision should be included as one of the “health extender” provisions in ATRA.

In short, when families of children with special health care needs and their partners spoke up, public policy was improved. The voices of many families made a difference!

Next steps. The F2F program will need another funding extension to continue beyond FY 2013. This will require another legislative vehicle, and the same type of hard work and collaboration that made this year’s victory possible.


Family Leadership in the States

Family Leadership in the States

When F2Fs Collaborate with Title V, Everybody—Especially Families—Benefits!

Partnering with Title V Title V programs across the country rely on stakeholders and organizational partners working together for the common goal of improving maternal and child health. Family-to-Family Health Information Centers (F2Fs) are well-positioned to provide valuable input and expertise to Title V—which in turn benefits the families served by these programs. It is truly a win-win scenario.

Just a few of the F2Fs who are collaborating with state Title V programs include:

  • Arizona’s Raising Special Kids: The AZ F2F, in partnership with the AZ Department of Health Services Office of Children with Special Health Care Needs, is helping to review the current Physician Residency curriculum. Families are sharing input to guide the integration of physical and behavioral health in the implementation of the Medical Home and Family Centered Care.
  • Arkansas Disability Coalition: Through a collaborative network, the AR F2F is working to increase awareness and usage of available resources and programs for CYSCHN by minority families.
  • Parent-to-Parent of Georgia: GA’s F2F collaboration with their Title V/CYSCHN program led to a face-to-face training for families and youth around transition to adult health care.
  • Idaho Parents Unlimited (IPUL): Using Health Care Transition kits, IPUL and Title V partners organized a conference to help families learn about systems and programs that support this important transition.
  • Family Voices of Illinois: IL’s F2F, working with Title V and other partners, developed a toolkit to help eligible participants make decisions about a mandatory, new, difficult to understand, health care program for adults, ages 19 and older, who have disabilities and receive SSI.
  • New Mexico’s Parents Reaching Out: NM’s F2F as a partner in the NM MCH collaborative, is participating with Title V and EPICS (Education for Parents of Indian Children with Special needs) in a new grant from BlueCross BlueShield New Mexico. The focus is to provide training to help families benefit from the Affordable Care Act

By sharing their voices and their expertise, families and family leaders, through the F2Fs, are helping to ensure that Title V programs are successful and meet the needs of the families being served.

From Our National Partners

PHLI: Deadline Extended: Still Time for Family Leaders to apply!
The deadline for applications to the Maternal and Child Health-Public Health Leadership Institute (MCH PHLI) has been extended to February 14th, 2013. All tuition and lodging charges are provided by the grant and travel scholarships will be available for Cohort IV Family Leaders.  Applications can be completed at the MCH PHLI website

MCHB: MCH Navigator
This centralized portal for anyone working in maternal and child health provides resources to enhance learning and professional development. It includes a “bundle” of resources targeted specifically for members of advisory boards, work groups, committees, or community and advocacy organizations, and particularly family leaders.

National Center for Prenatal and Postnatal Down Syndrome: Resources
Information in English and Spanish to help parents expecting a baby with Down syndrome.

Kaiser Family Foundation: Infographic
The health coverage maze is made more understandable in this flowchart, How People Will Get Health Coverage Under the Affordable Care Act

News  You Can Use

News You Can Use

Healthy Weight Collaborative Action Kit: This Action Kit from NICHQ is designed to help spread lessons learned from the Healthy Weight Collaborative to those interested in making change in their communities. Check out the videos, recordings, and other resources

SAMHSA: Coping with Violence and Traumatic Events: Here are resources for students, parents, teachers, caregivers, and health professionals

New MCH Library Knowledge Path: Racial and Ethnic Disparities in Health: The latest edition of this Knowledge Path includes current, high-quality resources about preventing, identifying, and eliminating racial and ethnic disparities in health

CDC Immunization Campaign: Resources are designed to educate parents about recommended immunization schedules

Robert Wood Johnson Foundation: RWJ Finding Answers:A six-step framework to help people and organizations reduce disparities

Care Notebooks:

What's New with Family Voices

Lynn Pedraza, Family Voices Executive Director, and Trish Thomas, Director of Diversity and Outreach, congratulate Diana Denboba for the awards she received at the 30th Annual HRSA Honor Awards ceremony honoring her years in service and her exemplary work with the Division of CSHCN on cultural and linguistic competence.   Congratulations, Diana!Family Voices’ New Diversity and Outreach Director, Trish Thomas
A Note from Executive Director Lynn Pedraza:
It is critical to recognize the truly great work of our very talented and experienced staff, and to keep their skills front and center so their knowledge can benefit as many people as possible. In keeping with this approach, Family Voices has fine-tuned roles for two of our staff who have been with Family Voices since it began. In her role as Co-Director of the National Center for Family Professional Partnerships, Nora Wells will now officially support mentorship and leadership development within and outside of Family Voices. We will share more about how this will happen as 2013 unfolds. As well, Trish Thomas has received a promotion to become Director of Diversity and Outreach. In fact, Trish has been working in this capacity for many years, and now has the title. Congratulations Trish!

I asked Trish to reflect on her new position and she shared these thoughts:

My experience is that we have been expanding diversity and outreach efforts in the area of family leadership gradually for many years. Our baby steps have led to power walking, then jogging, then running, and sometimes slowing down and starting again. I believe that as leaders and mentors of future leaders, we must show that Family Voices, F2F HICs, and SAOs value and actively support inclusion of diverse populations. It is vitally important that everyone feels culturally comfortable and these efforts need to be continuous if we are truly to “keep all families at the center of children’s health care.” Families of diversity represent the largest groups that are affected by health disparities. I want to say thank you for all your efforts in reaching out to these groups, and encourage you to continue your efforts. Your work makes a difference in the lives of families who so desperately need you to bring them into the circle along with their peers. Years ago at one of my first conferences when I came to Family Voices, I made this statement: “Please remember ‘nothing about us without us.” This sentiment holds true for me to this day.



  • Health and Wellness: Project IMPACT is embarking on a year-long health and wellness theme for 2013. Each month will feature a different health promotion theme, and we’ll provide resources and updates to share with families. February is National Children’s Dental Health month, so our focus will be Oral Health. Take a look at this new campaign from the Ad Council, encouraging kids to brush two minutes, two times a day, using creative two minute videos to brush by.
  • Family Matters Newsletter: Check out the January 2013 issue of Bright Futures Family Matters newsletter, featuring the organizations in the national Bright Futures Family Network

2011-2012 F2F HIC Data ReportNCFPP

  • Family-Centered Care Assessment: This questionnaire, recently completed by over 800 family members, provides a wealth of data to help us prepare the finalized tool for release in early summer. The tool will be used to reliably measure family-centered care! Many thanks to the family leaders who organized focus groups, those who disseminated the pilot, and to the hundreds of families who participated in the pilot testing.  We eagerly anticipate using this tool to contribute to the implementation of family-centered care for every family of CYSHCN.
  • NEW 2011-2012 F2F HIC Data Report: A 2-page report that provides highlights of data reported by F2F HICs in 2010-2011 demonstrating the value and impact in helping families of CSHCN. Family stories are included as well as highlights of the 2009/10 NS-CSHCN.

February is National Children’s Dental Health Month.

February is National Children’s Dental Health Month

Whether you're a member of the dental team, a teacher or a parent, the ADA has free online resources that can help you with oral health presentations, ideas for the classroom, and coloring and activity sheets that can be used as handouts.


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