July 2012

July 11, 2012

July 11, 2012: Download a Printable Version here.

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Feature Story: IMPACT Health & Wellness Initiative: The Wisdom of Families

Highlight: Help Save the F2Fs

Family Leadership in the States: Missouri F2F’s “Quilt of Support"

Legislative Corner: Washington Update

From Our Partners:

News You Can Use: Resources from F2Fs/SAOs

What's New with Family Voices:

IMPACT Health & Wellness Initiative: The Wisdom of Families
Bright Futures for Families: Promoting Healthy Child Development

While the needs of children and youth with special health care needs/disabilities (CYSHCN) are the priority of Family-to-Family Health Information Centers (F2Fs) and Family Voices State Affiliate Organizations (SAOs), these family-led centers are in a position to share health and wellness information useful to all children. The Family Voices IMPACT project (Improving Maternal and Child Health Policies so All Children Thrive) is partnering with selected organizations to help family leaders access community and family wisdom about health and wellness.

This past year, IMPACT worked with two F2Fs/SAOs—North Carolina’s Exceptional Children’s Assistance Center (ECAC) and Utah Family Voices—to increase their health and wellness outreach to the families they serve. Each F2F chose three of the American Academy of Pediatrics Bright Futures themes to work on. NC chose Nutrition, Physical Activity, and Oral Health; UT chose Child Development, Mental and Emotional Health, and Healthy Sexuality. Using scripts and training from IMPACT staff, UT and NC held focus groups with families, including one in Spanish in NC—some with CYSHCN, some with only typically developing children—around these themes. Marlyn Wells said:

Our goal was to discover what families know about these topics and what activities families incorporate into their daily routines from the plethora of messages that they receive. This year, IMPACT will be working with two more F2Fs: New Jersey’s Statewide Parent Advocacy Network (SPAN), and Family Voices Indiana. Two more F2Fs will be selected for the third year of this three-year grant. IMPACT will share best practices generated by families across the nation, through publications and policy briefs designed to highlight families’ wisdom and insights.

This exciting project will strengthen the partnerships between families and professionals as they learn best ways to dialogue about health and wellness messaging, and will benefit the F2Fs involved and others as information and techniques are shared. Gina Pola-Money, Director of Utah’s F2F said:

We are hoping that the information gathered from families is beneficial for the purposes of the project, but selfishly I am grateful that our FV F2F had the opportunity to get the training and experience of doing focus groups. It has given our staff the tools to become even more effective professional family leaders.

For more information about the IMPACT Project contact Leslie Carroll, IMPACT Project Director. Click here to access and download the health and wellness theme updates as well as other family-friendly materials and resources.


Help Your Congressional Delegation Learn about the Valuable Work of Family-to-Family Health Information Centers in Assisting Families

Federal funding for the F2Fs will end in May 2013. Without your efforts, families of approximately 11.2 million children with special health care needs/disabilities will no longer have this critical source of family support and information in their states.
Members of Congress need to understand how F2Fs help children and families.

Share Your Story - Share the Facts!
Download Key Talking Points
Download Fact Sheet: Assistance, Training and other Activities Provided by F2Fs (2010-2011)

Family Leadership in the States

Family Leadership in the States

Missouri F2F’s “Quilt of Support”

“Think about a quilt. There are two sides—the front is beautiful, soft, and comforting, and made up of a lot of different patches. The back is messy, with threads and seams, but necessary to hold the quilt together. MO F2F works together with systems, organizations, and family leaders to be the back of the quilt, so families need only experience the comfort. It’s a seamless way for families to get the support they need.”

--Jane St. John, Community Inclusion Specialist
University of Missouri Kansas City Institute for Human Development, UCE (F2F)

The quilt analogy, originally articulated by Michelle Reynolds, MO F2F Director, describes their philosophy for providing support for families. Key in this effort is a group of state and community support organizations that work together, including everything from passing out information to helping match parents through the Parent-2-Parent network.

In addition, MO has an active group of as many as 50 to 70 stakeholders, including family members, disability and mental health professionals, special health care needs professionals, and others, with many of them wearing two “hats” as both professional and family members. There is overlap in the affiliates and stakeholders, all working towards keeping the “back of the quilt” running smoothly.

Charting the Life Course: A New Way to Support FamiliesOne exciting product this F2F is making available is a booklet called Charting the Life Course: A New Way to Support Families. It started as a way to address the information and support needs of families of children with special healthcare needs. This publication has grown into a comprehensive twelve-page booklet with a grid integrating life stages and life categories, such as daily life, services and supports, health & wellness, and family support. “We hope the life course approach helps families realize that even when children are very young and as they age and grow into adulthood, their experiences and environment can shape how they will live their life in the future.” explains Jane.

Families played a key role in the development of the booklet, providing comments and ongoing feedback. A second edition is in the works that flips the questions around to represent what the child with disabilities (and later the adult) might ask at various ages. This approach demonstrates the changing role for parents, from providing 100 percent of the responsibility at first, to handing off that responsibility gradually as the child reaches adulthood.

Jane adds, “This booklet is about helping people to think differently—both professionals and families. It encourages professionals to have these conversations with the families, and vice versa.”

Visit the MO F2F at http://www.mofamilytofamily.org/.

Legislative Corner


Legislative Corner


Washington Update
The health care reform law was upheld!!!  (But the Medicaid expansion was weakened.)

The U.S. Supreme Court finally announced its ruling on the constitutionality of the landmark health care reform law, the Affordable Care Act (ACA), on June 29, 2012. Click here to read the Family Voices’ press release about the decision.

Here’s a brief summary of this complicated decision.

Individual mandate.  The biggest issue of the case was the so-called “individual mandate” of the ACA – requiring most people either to have health insurance or pay a penalty. The Court deemed that the “penalty” for failure to have insurance is a “tax” that Congress is constitutionally authorized to impose under its taxing power.  (The Court also ruled that the individual mandate was not a valid exercise of congressional authority under the “Commerce Clause” of the Constitution.)

Medicaid expansion.  Disappointing, however, was the Court’s decision on the ACA’s expansion of Medicaid to cover all individuals with incomes below 133% of the Federal Poverty Level (FPL).

The penalty for a state’s failure to comply with a Medicaid mandate is the withholding of some or all of the state’s federal matching funds (although HHS has never withheld all of a state’s matching funds).  The Court found that this penalty was so drastic -- since the federal match is such a large portion of state budgets – that it essentially puts “a gun to the head” of states, thereby constituting an unconstitutional “coercion” of states in violation of the principal of federalism embodied in the Tenth Amendment to the Constitution (which reserves for the states powers that are not given to the federal government). 

Instead of striking down the expansion, however, the Court decided that the law could be made constitutional by prohibiting HHS from withholding any Medicaid matching funds unrelated to the expansion in cases where a state does not cover the new “mandatory” eligibility population group.  Thus, the “mandate” is now effectively a state option.

Read more about other provisions, the implications of this decision, and a likely attempt to repeal it, on the Family Voices news feed.
Contact Brooke Lehmann (Blehmann@familyvoices.org) or Janis Guerney (Jguerney@familyvoices.org) if you have any questions.

From Our National Partners

CATALYST CENTER: Medicaid/CHIP Tutorial Webinar Series Continues
The fourth of five webinars in this series designed to give an overview of the newly released Medicaid/CHIP tutorial, Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the Children’s Health Insurance Program (CHIP), will be held on Wednesday, July 18th, from 12:00-1:00pm ET. Register here for this webinar and the last one in the series . You’ll also find previously recorded webinars here as well.
Webinar topics:

  • What is the Medicaid/CHIP Tutorial and What’s in It for Me? (aired April 18)
  • Understanding the Basics: Medicaid & CHIP Programs and Building Partnerships with Stakeholders (aired May 16)
  • What are the Pathways to Coverage and What are Covered Services for Medicaid and CHIP? (aired June 21)
  • Medicaid & CHIP: Funding, Service Delivery Models, and QI Measurement (scheduled for July 18, 12:00-1:00pm ET)
  • What Changes Can I Expect from the ACA and How Do I Make the Case for Partnership in My State? (scheduled for September 19, 2:00-3:00pm ET)
GENETIC ALLIANCE: Children’s National Medical Center and Baby’s First Test New Videos on Screening for Critical Congenital Heart Disease (CCHD) in Newborns
Two new videos, one for families and one for professionals, are available for viewing online. These videos describe the importance of screening for CCHD through a simple, non-invasive pulse oximetry method. The video for families is a part of the Baby’s First Test national newborn screening education center, and can be viewed here. The professional video can be viewed


AAP: Children’s Mental Health Promotional Ads
The American Academy of Pediatric’s new Mental Health Ads, one for parents of young children and one for parents of teens, encourage parents to ask their child’s health care provider about emotional development as well as the more commonly addressed physical development. The ads encourage partnership-building between families and health care providers. Click here to view the two ads.


IPFCC: Conference Presentations Available
Download presentations from The 5th International Conference on Patient- and Family-Centered Care for free.

News  You Can Use

News You Can Use

Friday’s Child News You Can Use continues to highlight some of the terrific resources developed by Family-to-Family Health Information Centers (F2Fs) and Family Voices State Affiliate Organizations (SAOs). Many of these family-friendly resources are the result of ongoing partnerships with other organizations and professionals. Some are state-specific; most could be easily adapted for use in other states, or at least provide inspiration.

Family Voices Colorado Fast Fact Series:
These handouts for families of CYSHCN provide information on specific topics, including: Camp Resources, Medical Appointments for Hispanic Families, Colorado-Specific Resources, School Accommodations and Modifications, and Transition from Pediatric to Adult Health Care.

Family Voices of Illinois Medicaid Integrated Care Toolkit:
This toolkit, available in both English and Spanish, helps eligible participants make decisions in a short period of time about a new mandatory healthcare program for adults, age 19 and older, who have disabilities, receive SSI, and reside in a specific area of Illinois.

PTI Nebraska (NE F2F) Individual Healthcare Plan:Developed in collaboration with school, medical, personnel, and families, this document addresses medical needs of students in the educational setting.


Health Care Financing for your Child with Special Needs: Six Ways to Access Medicaid & Other Health Care Benefits 

Vermont Family Network (VT F2F) Health Care Financing for your Child with Special Needs: Six Ways to Access Medicaid & Other Health Care Benefits:
Here’s an updated resource guide for families and professionals intended to help them navigate the complicated mix of private and public health programs available in Vermont.


What's New with Family Voices

Thanks to Karen Anzola
Family Voices thanks Karen Anzola for all her outstanding efforts in helping Family Voices grow over the past 10 years. Karen has retired from Family Voices as a staff person and is looking forward to spending more time with her family. Her gracious personality and congenial style were wonderful assets to the NCFPP Team and she was well-respected and appreciated by the many family leaders she helped during her tenure. Karen will be a member of Family Voices' Interim Leadership Team over the next few months, but we wanted to express our thanks and wish her good luck!

Family Pocket Guide
The IMPACT Project team has finished revisions of the new Bright Futures Family Pocket Guide: Raising Healthy Infants, Children, and Adolescents, 2nd Edition, a fabulous resource for parents and families. Orders are being taken now, and the new Pocket Guides will be shipped soon.

Social Media Webinars
Family Voices is planning for two webinars in the summer of 2012 to support State Affiliate Organizations and Family-to-Family Health Information Centers in getting the word out about their services most efficiently at low cost using social media. Details to be posted soon.

Family Voices Membership
Become a member of Family Voices or renew your membership! Members receive discounts on selected publications, and news important to families of CYSHCN. Most importantly, members know they are a critical part of the work National Family Voices is doing on behalf of children with special health care needs and disabilities and their families.


July is

July 2012 is UV Safety Month

July 2012 is UV Safety Month - visit http://healthfinder.gov/nho/JulToolkit.aspx



 Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit http://www.familyvoices.org/action/keep_informed. Should you have any questions about this newsletter, please email Peggy Curran