December 2012

December 18, 2012

December 18, 2012: Download a Printable Version here.

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Feature Story: From the Kitchen Table: Notes from Lynn Pedraza, FV Exec Director

Family Leadership in the States: Fostering A Network of Support, Compassion, and Resources

Legislative Corner: ACA: Essential Health Benefits & Habilitative Services

From Our Partners:

News You Can Use

What's New with Family Voices:

FROM the KITCHEN TABLE: Notes from Lynn Pedraza, Family Voices Executive Director

Keeping Families at the Center of Children's Health CareFamily Voices was born 20 years ago to bring the voices of families from their kitchen tables fully into the arena of public policy, so they could be heard where their wisdom was needed. We -- honor the visionary leadership of Polly Arango, Julie Beckett, and Josie Woll for the creation of this organization.

Bringing family voices forward into policy-making has never been more important than it is today. But as Family Voices has grown we know it can seem like we’re no longer sitting around the kitchen table with families.

So, I welcome your input at any time from your kitchen table – and I’d like to share with you every so often what I’m seeing from the “kitchen table” of the national office in Albuquerque, New Mexico.

In September Nora Wells (Family Voices National Center for Family and Professional Partnerships) invited me to join her for a week of meetings with partners and funders in Washington, DC. This was an invaluable opportunity to meet with collaborating organizations and see them in action.

Recently I traveled to Chicago to participate in the National Bright Futures Family Network meeting (see description below) along with Leslie Carroll and Melissa Vickers (Project IMPACT) and Trish Thomas (Diversity in Outreach).

In December I traveled to New Jersey to attend a state meeting with Statewide Parent Advocacy Network(SPAN NJ). I was impressed by the cultural diversity of the meeting participants, as well as the knowledge of SPAN’s staff and how supportive they were of each other’s work.

Soon I’ll return to Washington for an ‘Individuals with Disabilities Education Act (I.D.E.A.)’ meeting.

Each event has provided critical insight into the work of Family Voices, and the steps needed to move that work forward. It’s rewarding to begin putting the puzzle pieces together, and to know we are making a difference for children with special health care needs.

As our work evolves I believe we all need to stay fully aware of the laws that frame how we can best assist families and children in the context of the changing health care landscape. Please continue to read Friday’s Child, and join our webinars, as well as our partners’ webinars, so we can all stay well informed for our work together supporting families and family-centered care.

With appreciation and respect,

Lynn Pedraza signature

Lynn Pedraza,, 505-872-4775

Every little girl should have the opportunity to feel like a princess, and . . .


girl in wheelchair dressed up as a princess


every little boy should be able to feel like a rock star!

Young boy dressed up as a rock star, playing the drums, from his wheelchair


There are very few organizations that help all families of children and youth with special health care needs and/or disabilities get their voices heard in the national arena. As the year closes, we'd like to ask for continued support from you, our Family Voices Community.
Make a secure donation to Family Voices at

Thank You to the Many of You Who Have Already Donated this Year to Help Family Voices!

Family Leadership in the States

Family Leadership in the States

Fostering A Network of Support, Compassion, and Resources

It’s not too late to contribute to the Family Voices Families Helping Families FundHurricane Sandy has come and, thankfully, gone, leaving in its wake tremendous loss of life, property, and sense of normalcy and routine. When disaster strikes, families of children and youth with special health care needs and disabilities can be hardest hit. Their access to specialized supplies, equipment, and medical services critical to everyday life are threatened or lost. Sometimes, just knowing where to turn for help, or, from the flip side, knowing how best to offer help is a challenge. As agencies along the eastern seaboard worked to help families and children with special needs and disabilities affected by this superstorm, Family Voices State Affiliate Organizations (SAOs), F2F HICs and partners from around the country stepped up to the plate with offers of support and resources based on experience in similar situations. The power of these family leaders—singularly and in concert—was quite evident and amazing. Discussions and offers to help with donations of money, clothing, and other necessities, as well as resources and practical suggestions on how to best reach the families in need dominated the SAO and F2F email lists. National Family Voices created the Family Voices Families Helping Families fund to centralize donations to the areas hardest hit.

The outpouring of compassion, understanding, donations, and offers of help were appreciated. Josie Thomas, Executive Director of The Parents Place of Maryland (Maryland’s SAO and F2F), shared her appreciation: “For those of you who are responding to the requests for information regarding Sandy and emergency resources, we thank you. You are providing such important information for all of us as we work through the mess Sandy left behind.”

Legislative Corner


Legislative Corner


Essential Health Benefits ACA: Essential Health Benefits & Habilitative Services
The Department of Health and Human Services (HHS) recently issued a proposed regulation that, among other topics, addresses the “Essential Health Benefits” that must be included in certain health plans pursuant to the Affordable Care Act (ACA). The proposed regulation raises serious concerns about the availability of “habilitative” services—therapies and devices that help individuals to acquire or maintain skills or function.
BACKGROUND: The ACA requires that a package of “Essential Health Benefits” (EHB) be covered in all health insurance plans sold in Exchanges and in all non-grandfathered individual and small group policies for plan years beginning in or after 2014.

ACA Essential Health Benefits List:
- ambulatory patient services
- emergency services
- hospitalization
- maternity and newborn care
- mental health and substance use disorder services
- prescription drugs
- rehabilitative and habilitative services and devices
- laboratory services
- preventive/wellness services and chronic disease mgmt
- pediatric services, including oral and vision care

The Department has proposed that each state establish its own set of EHBs, based on a “benchmark” plan selected from one of four types of plans sold in that state (e.g., largest small group plan, largest HMO). If a state fails to select a benchmark, then the default will be the largest small group plan in the state. About half of the states have already identified their benchmark choices, which must be made by December 26.

HABILITATIVE BENEFITS: With respect to habilitative services, the proposed rule is quite troublesome. If the state’s benchmark plan does not include any habilitative services, the state would be able to define that benefit. But HHS does not provide guidance about how states should do so.

If a state declines to define habilitative services, then insurance plans will determine the benefit. Each plan must either provide habilitative services that provide parity with rehabilitative services, or establish its own set of habilitative benefits and report them to HHS.

If insurers get to define habilitative services without any parameters, each one will have an incentive to provide minimal benefits, so that its plan will not attract a disproportionate number of people who need costly habilitative services.

Family Voices and other groups will be submitting comments on the proposed regulation and we urge others to provide public comments on benefits that are important to CYSHCN. Submit comments by 12/26 at!docketDetail;D=CMS-2012-0142.


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

From Our National Partners

AMCHP: 2013 Registration Booklet Available
The AMCHP conference is scheduled for February 9-12 at the Omni Shoreham hotel in Washington, DC. Registration booklet with session descriptions is now available online. Early bird registration goes through January 11.

MCH Public Health Leadership Institute: Applications Open
Applications for the year-long leadership development program for the MCH workforce are being accepted through February 1, 2013. The PHLI is designed to “significantly expand self-awareness and quickly build practical skills for effectively leading, managing people, and building partnerships, to advocate for and create the MCH systems of tomorrow.” As in years past there are five positions specifically for family leaders. There are no onsite charges, and partial travel scholarships are available. To apply for Cohort IV (2013­2014), go to To read more about family leader involvement in the program, see the October 2011 issue of Friday’s Child.

News  You Can Use

News You Can Use

MCH Library: Overweight and Obesity in Children and Adolescents Knowledge Path

MCH Library: Reaching Out to Children and Youth Following Disasters Resource Brief

Urban Health Institute’s Demystifying Data Project: Healthcare access and utilization among urban American Indians and Alaska Natives

Urban Health Institute’s Demystifying Data Project: Affordability of health care for urban American Indians and Alaska Natives

University of Washington School of Dentistry and Washington State Department of Health—Oral Health Program: Parents and Caregivers Dental Health Guidance sheets for families and patients with special needs, in English, Russian, and Spanish

What's New with Family Voices

Jennifer Thomas in Amman, JordanKASA: Going International, by KASA Director Jennifer Thomas
In September, I traveled to Amman, Jordan, with eight other women with disabilities as part of the U.S./Jordan: Young Women with Disabilities Leadership Exchange Program, hosted by Mobility International USA (MIUSA) and I Am A Human Society for Disabled People’s Rights and sponsored by the U.S. Department of State Bureau of Educational and Cultural Affairs.

During our stay, we visited day programs and schools that provided support to people with disabilities, such as the Society for Rehabilitation and Training of Disabled Women, the Jordanian Federation of People with Disabilities Sports, and the Holy Land Institute for the Deaf. We also visited Prince Raad at the Higher Council for Affairs of People with Disabilities. Prince Raad has been very involved in the disability rights movement in Jordan. From this visit, I learned of the hardships of Jordanian women and the power of family and community. These ladies and men are pushing hard against systems that fail to acknowledge them. They are joining together, relying on their faith and their families for strength. It was an awesome trip!

PROJECT IMPACT: The National Bright Futures Family Network Convenes Again at AAP HeadquartersFamily Voices Project Impact staff recently attended the Bright Futures Family Network meeting.  Network members, who share a common goal of improving the health and wellness of all children, include:  Family Voices, American Academy of Pediatrics, Community Cafe Collaborative, La Leche League, Migrant Health PromotionMothers of Supertwins/Preemie Care, National Center for Farmworker Health, National Foster Parents Association, National Healthy Start, National Indian Child Welfare Association, National Military Family Association, National Parent Teacher Association, and Today's Child Communications. In the meeting, the group identified health and wellness hot topics across a range of sectors/settings, including the health provider setting, home and family setting, school, community-neighborhood settings, and the workplace.  Next steps will include sharing resources and developing webinars and social media campaigns based on health promotion themes.

NCFPP: Happenings
Focus Group Findings

  • Webinar 12/3/2012: From Research to Real Life: Increasing Visibility and Use of F2Fs
    Presented by Suzanne M. Bronheim, PhD, of Georgetown University Center for Child and Human Development and F2F participants, this webinar discussed findings from a research partnership to better understand how to increase the use of F2F services by Hispanic/Latino and African American families. Download recording here.

  • Webinar 12/13/2012: Essential Health Benefits: What is Important for CSHCN?
    Presented by Janis Guerney, Family Voices, Meg Comeau, Catalyst Center, and Peggy McManus, National Alliance to Advance Adolescent Health, this webinar gave participants detailed information on the ramifications for families of CSHCN of proposed rule changes to Essential Health Benefits, an important component of the Affordable Care Act. Comments on proposed rule changes are due to HHS by 12/26/2012. Recording and materials from this webinar are posted here.

  • Testing the Family-Centered Care Assessment
    The Family-Centered Care Self-Assessment Tool, is now being pilot tested in a web-based survey. To date, we have received responses from over 480 families! Our goal is to have 600 responses from families in every state and DC. If you are a family member of a CSHCN, please complete the survey.

December is Safe Toys and Gifts Month.


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