April 2011

April 08, 2011

April 7, 2011: Download a Printable Version here.

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Feature Story: Working Together to Improve Maternal and Child Health: The 2011 National Family Voices Conference

Family Leadership in the States: F2F HICs Grantee Meeting: A Community of Family Learners

Legislative Corner: Rylin Rogers Sets the Record Straight

News from Family Voices: We've Moved

From Our Partners:

News You Can Use:

Feature Story: Working Together to Improve Maternal and Child Health: The 2011 National Family Voices Conference

Dr. Merle McPherson, Mike Fraser, Sophie Arao-Nguyen at 2011 GalaA big “Thank You” is in order—not only to those who worked behind the scenes to organize this year’s National Family Voices conference, but also to those who joined us to share experiences, concerns, and plans for the future. The opportunity to network was mentioned frequently as the most worthwhile aspect of this bi-annual get-together. This year marked the first time we co-located with the annual AMCHP conference.

The gathering began with a very busy half day for the meeting of the F2F HIC Grantees  (see below), followed by the opening Family Voices Conference Awards Reception. The reception honored friends of Family Voices:

  • The Senator John Chafee Legislative Friend of Children and Youth with Special Health Care Needs Award was presented to Senators Jeff Bingaman (NM) and Daniel Inouye (HI)
  • The Teamwork Award was presented to the New Mexico MCH Collaborative
  • The Mary Clarkson Professional Partner Commitment to Kids Award was presented to The Boys  Town Institute for Child Health Improvement, Tom Tonniges, Amy Gibson, Michelle Mertz
  • The Vince Hutchins Angel Award was presented to Cassie Johnson (posthumously) (WA)
  • The Polly Arango Leadership Award was presented to Marcia O’Malley (NV)

Monday morning, the Family Voices Conference sessions began with the opening plenary session on “Innovation in a Time of Change: Where’s the Fit for CYSCHN and their Families?” FV/AMCHP breakout sessions followed, focused on a wide variety of topics including partnerships, cultural competency, and transition. FV “Power Workshops” covered topics about children with congenital conditions, using social media, including dads, and using state data to advocate for effective implementation of the ACA.  Lunch provided opportunities for families and MCH partners to network in regional groups.

Monday brought a special evening of celebration and remembrance: the Family/Voices/AMCHP Fundraising Gala—A Legacy of Leadership. Representative John Dingell (MI), 90 years young, the longest-serving Member in the history of the US House of Representatives, was recognized with the Family Voices Lifetime Achievement Award for his tireless efforts to make health care affordable and accessible to all.  He gave a rousing inspirational speech on the history of health care reform and the many efforts that have been part of its passing. Family Voices Executive Director Sophie Arao-Nguyen presented the FV/AMCHP Legacy of Leadership Award posthumously to Polly Arango. Polly’s husband and family accepted the award, and showed a beautiful and poignant slide show tribute to Polly. AMCHP CEO Mike Fraser presented the AMCHP Merle McPherson Award in her name to all family leaders, and then surprised Merle with an award for her own efforts.

On Tuesday Family Voices leaders participated in a series of breakfast roundtable networking discussions on topics chosen by family leaders.  A powerful combined Family Voices/AMCHP session featured the U.S. Surgeon General Regina Benjamin and Andy Goodman, who spoke on the power of storytelling to effect change—a time-tested notion for families with children with special health care needs (see Legislative Update below for an example). He spoke of the importance of making websites engage the reader by the stories they tell.  Download a webcast of Andy Goodman’s presentation.

An interactive Family Voices plenary focused on implementing the ACA in the states.  The conference closed with a shared luncheon plenary continuing  the theme of implementing the ACA , which included a poignant presentation by Donene Feist, Family Voices of North Dakota.

Tuesday afternoon, many conference attendees made visits to Capitol Hill to impress on legislators the importance of continued Title V funding and the ACA on families of CSHCN.

Conference attendees were pleased with sessions and speakers, despite a few glitches and logistical issues. Many evaluations provided concrete ideas on ways to improve future conferences.

All in all, the F2F Grantee Meeting and Family Voices National Conference was a rousing success, providing new knowledge and inspiration to carry on the wise charge of Polly:

"Let us remember as each of us makes decisions that will affect children—whether we are parents, educators, health professionals, or government officials—it is our duty to consider if that decision either affirms or denies a child’s most basic human rights."

Click here for more information about the conference and to see Conference and Gala pictures.

Family Leadership in the States

Family Leadership in the States


F2F HIC Grantee Meeting: A Community of Family Learners
2011 F2F HIC Activities Sharing NotebookRepresentatives from all MCHB-funded Family-to-Family Health Information Centers gathered with federal partners in Washington for their annual Grantee Meeting on February 13, 2011. During this action-packed meeting, F2F staff had the opportunity to attend breakout sessions facilitated by fellow F2F staff and federal partners, on F2F Fundamentals, Advanced Topics in F2F Management, Health Literacy, Partnering with Community Health Centers, and Cultural Competency. The sessions on Cultural Competency, Health Literacy, and Partnering with Community Health Centers received rave reviews and were frequently cited by attendees for their specific suggestions and resources that F2Fs will be able to put to use back in their states. For example, Maria White, from the HRSA Office of Equal Opportunity, Civil Rights, and Diversity Management, explained that if an organization receives so much as $1 in federal funding, then that organization must comply with Title 6 regulations that include specifying the need for interpreters, including sign language, for any who need them (either on staff or through telephone interpreter services). She cautioned that interpreters should be not only proficient in the language, but also in the specialized terms needed, such as medical terms, or financial terms, etc. Later sessions in the day provided information on the financial responsibilities of an F2F, and the Affordable Care Act.

Attendees at this meeting commented on the valuable  opportunity to compare notes with other F2Fs:
The most useful aspect of the meeting was hearing from other F2Fs about some of the work they are doing in their state; also hearing that many others face the same challenges that we do.

Participants received the Family-to-Family Health Information Centers Grantee Meeting Notebook: Sharing Activities, Ideas, and Resources, containing sample activities from each state. Checkout the wealth of information in this booklet.

Attendees left feeling inspired and motivated—recommending that in the future the meeting be at least a  full day event. “These opportunities to meet together as F2F HICs are always helpful. It creates a ‘safe’ helpful environment to grow and cross pollinate, sharing best practices.”


Legislative Corner

Legislative Corner

Health Care Reform: “Massive Mistake” or New Opportunities for Families of CSHCN—Rylin Rogers sets the record straight

The February 7, 2011 issue of the Wall Street Journal carried an opinion piece by Indiana Governor Mitch Daniels, stating his objections to the health care reform law. His arguments were lacking in the specific details that families with children with special health care needs face day in, day out. Rylin Rogers,  Family Voices Indiana, wrote the following in response to this article. While the Journal opted not to print her response, she has given us permission to share it here:

I was saddened to read the opinion piece by Mitch Daniels, Governor of my home state of Indiana, in which he describes the health care reform law as a “massive mistake.” My role as mother to Matthew (age 13) and Laura (age 10)—both of whom have complex medical conditions—has provided me an intensely personal connection to health care at multiple levels. For years I have been intimately acquainted with our family’s employer-sponsored private insurance, the spectrum of available or unavailable options on the market, and the variety of public programs intended to help meet my children's complex needs. I have seen firsthand much of what is not working in our nation’s health care system. In the midst of the health crises that are very real parts of my children’s lives, my family has frequently carried the added burden of sometimes-staggering medical debt.
Our family is not alone in facing these problems:  one in four Indiana households include at least one child with a special health care need, with over 20% reporting that their child’s health conditions cause financial problems for the family. Families like mine live in every community in Indiana and across our country. Yet, our perspectives, needs, and values seem unknown to Governor Daniels. His view that implementation of the Affordable Care Act is an impending disaster seems to turn a blind eye to those of us for whom the real disaster has been the lack of effective and comprehensive health care reform—families who exit the Neonatal Intensive Care Unit with a weeks-old child already having met an insurance policy’s lifetime cap; families like mine who have been job-locked for years, passing on career-advancing opportunities because our children’s pre-existing conditions made them virtually uninsurable were we to change employers; families like mine whose health care costs frequently limit their food budgets.
Instead of the “massive mistake” that Governor Daniels finds the Affordable Care Act to be, I find opportunities for my family:  to maintain coverage for my children; to accept a new or better job without concern for losing my insurance coverage; to access essential treatment for my children without the threat of annual or lifetime insurance caps which would bankrupt our family. For my state, which currently ranks 36th in infant mortality, has the fifth highest smoking rate in the nation, and where obesity is epidemic, I see opportunities for cost saving in the preventive care and lifestyle changes the Affordable Care Act encourages.
I am deeply concerned by Governor Daniels’s doomsday predictions about Health Care Reform, not because I too see doom, but because I see governors like him who will refuse to maximize the success of these reforms.

Read Governor Daniel’s opinion piece in the Wall Street Journal.


News from Family Voices

We've Moved!

National Family Voices has moved to a new location!  As you may recall, the national office was flooded in early February due to below zero temperatures. Our new office address is:

Family Voices, Inc.
3701 San Mateo NE, Suite 200
Albuquerque, NM 87110 

Telephone lines and internet connection will be installed on April 13.  The telephone numbers will remain the same.  Thank  you for your patience as we continue operations in a new office environment.

From Our National Partners

Catalyst Center: The Affordable Care Act
The Affordable Care Act: Here’s a side-by-side comparison of major ACA provisions with implications for CYSCHN.It is a companion to “The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers”, developed by the National Academy of State Health Policy (NASHP) for the Catalyst Center.

COMMONWEALTH FUND: State Scorecard on Children’s Health Care Funds
The State Scorecard on Children’s Health Care Funds evaluates how the system is working for children.  An interactive map allows state comparisons showing potential benefits gained by achieving performance benchmarks. Download a podcast describing how health reform can improve child health.

AAP: Culturally Effective Care Toolkit for Practicing Pediatricians
This free online resource provides practical help for pediatricians and office staff in providing culturally competent care to their patients and families.While pediatricians are the toolkit’s target audience, there is a wealth of culturally-based information helpful for anyone who deals with health care in a diverse setting.

News  You Can Use

News You Can Use

Need Help with Income Tax?
Here is a resource from Family Voices of Illinois to help you negotiate the IRS maze: http://www.familyvoicesillinois.org/documents/documentdetails.asp?did=722

MCH Library’s New Child Health Resources for Families and Professionals: Reaching Out After Disasters

Two more Cultural Competency Resources

National Vaccine Plan from the Department of Health and Human Services
HHS has released a new ten-year strategic plan to encourage vaccine research and development; plan for A Year of Conversation: Social Media and NCBDDD’s 10 Years of Servicefinancing, supply, and distribution; and encourage informed decision-making by consumers and health care providers.

A Year of Conversation: Social Media and NCBDDD’s 10 Years of Service:
Presentation from the National Center on Birth Defects and Developmental Disabilities on using social media and the website to extend their reach and provide opportunities to connect partners, families, and other stakeholders. http://friendsofncbddd.org/



 April is National Autism Awareness Month


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