September 2012

September 06, 2012

September 6, 2012: Download a Printable Version here.

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Feature Story: Family Voices Welcomes New Executive Director Lynn Pedraza

Family Leadership in the States: Family-to-Family: Power of Social Media

Legislative Corner: Washington Update

From Our Partners:

News You Can Use

What's New with Family Voices:

Family Voices Welcomes New Executive Director Lynn Pedraza!

Lynn shares her thoughts as she begins her new position:

Lynn Pedraza, Family Voices Executive DirectorI am honored to be the new Executive Director of Family Voices. I believe the personal approach to managing an organization creates successful working relationships and I look forward to learning from the many wonderful individuals who will touch my life via Family Voices. My approach is to think systemically – for example, in terms of supporting family leadership across the country, including the network of Family-to-Family Health Information Centers and Family Voices State Affiliate Organizations. However, I also understand the importance of planning our work in detail, from the ground up. I believe we need to keep our eyes on our core values...while asking the right questions at the right time...and I will welcome your constructive criticism to help accomplish our mission.

As Margaret Mead said, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."  Family Voices has done a remarkable job of staying true to the courageous families that founded this organization. They moved our country from a system that institutionalized children who had a disability or chronic illness to one that aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. This grassroots effort has supported families standing together for the rights of their children and for youth-led self-advocacy. The passion continues today as families partner with professionals in many arenas to improve health equity, enhance quality of care, and position families as decision-makers at all levels.  

Our country's economic crisis poses a real threat to the funding of family-led organizations and to programs like the Family-to-Family Health Information Centers (F2F HICs). I have partnered for years with my local F2F-as a mom as well as a school district administrator in my community.  These state-based centers staffed by family members are a critical resource for our families because navigation of government systems is so often challenging. At times I didn't want to speak to another person unless I was sure they knew what it was like to live with children like mine.

We must not just save the F2Fs, but increase their reach. Opportunities to continue mentoring new family leaders must be expanded. If we are to be successful, we must work together to secure funding for this family-driven movement. Federal, foundation, and corporate funds as well as local supports and relationships are needed.  I look forward to working with each of you to ensure that authentic "family voices," connected around the country, are strengthened and sustained into the future.

  As a mother of children with special health care needs and a long time family advocate, I am excited to be on this journey with Family Voices, its affiliates, partners, and network of family leaders.

Family Leadership in the States

Family Leadership in the States

Family-to-Family: The Power of Social Media

FV Indiana FacebookSocial Media is nothing new—millions of people engage in some form of social media daily. Facebook alone has nearly 850 million active users each month. Family Voices State Affiliate Organizations (SAOs) and Family-to-Family Health Information Centers (F2Fs) are using it to help spread the word about their work on behalf of families with children with special health care needs. At the writing of this article, at least 47 F2Fs/SAOs have Facebook pages, and 17 or more have Twitter accounts. A recent series of Family Voices webinars provided both instruction and insight on how social media can be used to help reach families in exciting ways.

The major benefit for an organization to be connected through social media is that it allows real-life stories to be shared quickly and broadly. Stories are compelling; they show the tangible ways F2Fs are available to help. These stories can lay the groundwork to influence others, get funding, and connect to more families and potential partners.

Jennifer Akers, Project Coordinator for Family Voices of Indiana, discusses social media:

I know the SAOs/F2Fs often see this as yet another thing to try to do with limited resources, but I see it, instead, as a shift in what we're doing. We don't do a weekly newsletter; we share resources daily on Facebook and Twitter.

Local journalists follow FV Indiana’s blog and contact them about possible story ideas. And the sharing on social media helps connect families:

A few years ago, I met another mom (Christina Andrews) via Facebook whose three-year-old child Kayla had a similar condition to my child's. When a story was published about her attempts to get the Katie Beckett waiver for her child in Tennessee, I shared with Melanie Rubin (National Family Voices), that I knew her. National Family Voices then used that connection to shape a story about our different experiences in different states caring for children with similar needs. We have shared that story on our website and via social media to raise awareness of the issues for other families.

It’s all in a day’s work for SAOs/F2Fs. Jennifer says:

In general, we try to meet families where they are. We know they're on Twitter, Facebook, Pinterest, etc., so we make ourselves visible there. That doesn't mean we don't provide one-to-one support; it just means we try to make it as easy as possible to find that support.

Note: Very sadly, as we were working on this article, Kayla passed away on Tuesday, August 28. Please join us in sending support and prayers to Christina, her husband, and family, including Kayla’s twin, Sarah, and older brother, Charlie.

Legislative Corner


Legislative Corner


Washington Update
Since Congress was on recess in August, this update will focus on an important aspect of health care reform—“essential health benefits”—about which states must make a significant decision by September 30.

Under the Affordable Care Act (ACA), all health plans sold after January 1, 2014, on the individual and small-group insurance markets (whether sold within or outside the state “exchange”), must include “essential health benefits” (EHB). These benefits must cover at least ten broad categories of services—ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care.

Under a federal bulletin issued in December 2011, states will determine the details of the benefits that must be included in these broad categories. Each state must choose a “benchmark” plan from among:  (1) any of the three largest small group plans in the State; (2) any of the three largest State employee health benefit plans; (3) any of the three largest national federal employee plan options; or (4) the largest insured commercial non-Medicaid HMO operating in the State. (Plan size is determined by enrollment.)

In general, the “benchmark” plan’s benefits package will serve as the state’s EHB package. The Department of Health and Human Services (HHS) has noted, however, that many insurance plans from which the benchmark plan must be chosen do not include all of the benefit categories set forth in the ACA, particularly some that are important to CYSHCN—specifically habilitation services and pediatric oral and vision services. Thus, HHS has established special rules for determining the benefits in these categories. (See the FAQ document linked below.)

By the end of September, states must notify HHS of their benchmark plan selection. At some point in the future, HHS will determine the cost-sharing rules for plans subject to the ACA requirements. It will be difficult to strike a balance between ensuring that plans provide adequate benefits and yet remain affordable. As families and advocates of CYSHCN, please make sure your voices are heard during the critical decision making around benchmark plan selection!

Contact Brooke Lehmann ( or Janis Guerney ( if you have any questions.

From Our National Partners

AMCHP: Affordable Care Act Fact Sheets
These six fact sheets help state MCH programs understand and implement health care reform:

  • Breastfeeding Fact Sheet
  • Adolescent Health Fact Sheet
  • Children and Youth with Special Health Care Needs (CYSHCN) Fact Sheet
  • Medical Home Fact Sheet
  • Women's Health Fact Sheet
  • Children and Youth with Autism Spectrum Disorder and Other Developmental Disabilities

AAP: New Resource on Autism Autism Spectrum Disorders: What Every Parent Needs to Know
This new guidebook is available for sale on the AAP website.

National Center for Medical Home Implementation
This National Center has many helpful resources, including two video tutorials: Website video tutorial that describes the six sections of the website and Building Your Medical Home Toolkit tutorial that explains building blocks and tools in this kit.

CDC: Neurological Disorders & the Flu
This new study, “Neurologic Disorders among Pediatric Deaths Associated with the 2009 Pandemic Influenza,” published in Pediatrics, links deaths from flu with neurological disorders in children. Family Voices, CDC, AAP, and Families Fighting Flu are partnering to help disseminate this critical information.

HRSA: Addressing Intimate Partner Violence and Perinatal Depression
This webinar series addresses intimate partner violence and perinatal depression as co-morbidities; includes strategies, tools, and resources.

New Director
Dr. Hani Atrash has been appointed Director of the Division of Healthy Start and Perinatal Services in MCHB. Dr. Atrash brings almost 40 years of experience in preconception care and support of evidence-based public health practices to address complex issues such as infant mortality.

CityMatCH Conference
Advancing Partnerships: Data, Practice, and Policy: December 12-14, 2012, San Antonio, Texas

News  You Can Use

News You Can Use

Family Voices Project IMPACT: Bright Futures Family Pocket Guide: Raising Healthy Infants, Children, and Adolescents, 2nd Ed. is now available!

Family Voices Project IMPACT: Getting to Know Title V —the popular Family Voices mini-guide that describes the Title V mission, history, services, and how families participate in Title V programs and policies—has been revised and updated!

Annie E. Casey Foundation: 2012 KIDS COUNT Data Book: State Trends in Child Well-Being
This new data book shows both “promising progress and discouraging setbacks for the nation’s children.”

Cultural Competence for Students in Medicine and Public Health
This new report from the American College of Medical Colleges and the Association of Schools of Public Health is designed to help medical school faculty and public health graduate schools standardize curricula and prepare graduates for culturally-competent practice.

Free Hurricane Warning App from Red Cross.

What's New with Family Voices

IMPACT is sponsoring two webinars to showcase the work of F2Fs in North Carolina and Utah as part of the Health & Wellness Initiative. Learn about how focus groups can be used to engage families in sharing their unique wisdom and experiences in improving the health and wellness of their families. Note: You must be registered in order to attend these free webinars. For information, please contact Melissa Vickers, 731-986-3082.  These webinars will be recorded.

  • September 6, 2012, 3:30pm ET: Facilitating Successful Focus Groups for Families: Best Practices A skill-building webinar to describe techniques that work well with families.  Register here.
  • October 4, 2012, 3:30pm ET: Food for Thought: Lessons Learned from Families about Health & Wellness - Learn surprising insights that come when families are given the opportunity to share their expertise. Register here.

KASA Board of DirectorsKASA:
The KASA Board of Directors’ Strategic Planning Meeting was held on August 16-17, 2012, in Washington, DC, to development of a strategic plan and goals for the next three years. The young people were very excited and pleased to have the opportunity to work together in person. Brooke Lehman, Family Voices Public Policy Co-Director, presented information to KASA Board members about advocacy work at a policy level and how to work most effectively with legislators. Ryan Easterly, of the HSC  Foundation shared information with the KASA Board members about the HSC’s programs and initiatives. Discussion ensued about future possibilities for collaborative work between KASA and HSC.

The KASA Task Force is hard at work in preparing a document that focuses on the similarities and the differences between transitioning to high school, college, and beyond college. If you are a young person with a disability and have a story that you would like to share about your transition process, the KASA Task Force is interested in hearing about it.

The KASA Task Force has extended its application deadline for new members to September 21, 2012. Youth, ages 12-18, who are interested in learning about disability-related issues and gaining leadership skills are encouraged to apply. For more information please contact Jennifer Thomas or (334) 538-0401. The KASA Task Force application can be found on KASA’s website.

September is Newborn Screening Awareness Month. Visit or


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