July 2010

July 21, 2010

Remembering Polly Arango

Polly ArangoMany have written eloquently about Polly's personal and professional impact on their lives and work. Polly's dedication, wisdom, generosity and multiple talents will be deeply missed. Among Polly's many skills were her ability to conceptualize and communicate ideas in elegant and simple language, her ability to align diverse groups to accomplish a common goal and her capacity to mentor others. These gifts played a critical role in the formation and development of the national Family Voices organization and the Family-to-Family Health Information Centers, now funded in every state and the District of Columbia.

When President Clinton began work on health care reform in 1992, there was no national strategy to engage families in the debate. Out of this need, Family Voices was born. Polly became the first Executive Director and brought compelling skills to the role. She was a passionate advocate who could translate ideas into crystal-clear language. Her experience as a newspaper writer had given her a particular sensitivity to brevity and the power of language. To be convincing, Polly thought, we must be able to express our ideas in straightforward, simple words. No fluff allowed! Every week Polly produced a "one pager" with key ideas about the needs of children with special needs and health care reform. These were disseminated to thousands by fax and mail. These excellent pieces built the reputation of Family Voices as a trusted resource.

Polly believed in the power of a story to deliver a message. Family Voices represented the power of thousands of these stories. We were (and still are!) real people delivering messages from real life. It is a unique and much-needed perspective. Polly had a special talent for nurturing and cultivating this voice. Polly's vision of family was wide and inclusive. She believed in the strength of all families to nurture themselves and their children and to partner in improving health care. She conveyed this message with conviction from kitchen tables to board rooms and negotiating tables, as well as to state, national and international audiences.

Polly, along with her husband John, was an experienced community organizer. She knew the value of shared responsibility and of building common goals. Polly was a skilled listener, who recognized that everyone's concerns were important, and who also knew how to create consensus when needed. Polly was a mentor who was superb at identifying other family leaders' skills and interests and engaging them in areas they cared about. As Polly was invited to state and national arenas, she often brought local families along to learn the ropes and experience the national scene. Polly believed in family professional partnerships as a core principle of family-centered care. She was expert at building common ground with professional partners and working together to advance shared goals.

The health care reform of the 1990s was not successful, yet, the idea that families had key roles to play in partnering to improve health care had gained a firm foundation. The need for Family Voices as an organization to give voice to families, to support and connect family leadership and to promote the concepts of family-centered care was clear. Polly's extraordinary skills had led the way. Polly led the Family Voices organization for 10 years through the development of pilot Family-to-Family sites and the writing of federal legislation to fund Family-to-Family Health Information Centers. Polly continued to contribute to Family Voices in multiple formal and informal roles throughout her retirement. Polly was generous in all that she did.

Thank you, Polly. Your vision of a vibrant national network of connected families, encompassing families from all races, cultures and backgrounds, with the skills and support to help other families and to partner with professionals working toward family-centered, community based, comprehensive, coordinated, culturally competent health services is in place. The work will continue. Your legacy will live on in the hearts, minds and work of generations to come. Your spirit will forever be our guide.

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Family Leadership in the States

Family Leadership in the States: The Power of Mentoring: All the Way to the White House

One indirect result of Polly Arango's untimely passing is the realization of how far-reaching her impact has been-and continues to be. Polly was a consummate mentor, always looking for ways to empower the next parent advocate. Case in point: Donene Feist, Family Voices of North Dakota Director. Donene describes the day Polly and Julie Beckett called her to ask if she would represent Family Voices in North Dakota. "I was star struck! It was as if I'd been called by a rock star!" Polly encouraged, nudged, gave pointers, offered support, and empowered Donene to make decisions about FVND and advocacy in general.

Donene has taken Polly's lessons to heart and is mentoring new family leaders through yearly Parent Leadership Institutes and personal contacts. Recently, Donene accompanied one of her mentees to a White House press conference concerning the passage of the Affordable Care Act and lifetime limits on insurance plans. Jennifer Restemayer had been invited to attend the press conference because her daughter Allison's health care costs threaten to surpass the $2 million lifetime limit-and Allison is only 9.

Donene helped to see that Jennifer's story made it to the right people so that it could be heard. And while Jennifer sat on the front row of the press conference, Donene sat in the back, next to Secretary Kathleen Sebelius and various members of Congress-and took advantage of the opportunity to share her thoughts.

Mentoring, like family advocacy, is an ongoing process, something deeply understood by Polly. "She helped people find their voice-‘Try this, try that, keep speaking!' And the job is not done. "Regenerating the next generation of advocates is crucial. Our work is never going to be done as there will always be new families needing our help. As leaders, if we aren't developing new leaders, we aren't doing our job. We have to find an avenue to do this-it has to be done. It's key to sustain the family movement.

Donene-Polly would be proud of you-and no doubt she was!

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Legislative Corner

Legislative Corner

The past month in Washington has been a busy one for the Department of Health and Human Services (HHS). On July 1, HHS launched a new website, http://www.healthcare.gov, which helps users find suitable public or private health insurance available in their locality.

Another new website, http://www.pcip.gov, includes information about the new federal "Pre-Existing Condition Insurance Plan" and similar, state-based high-risk insurance pools that are available to children and adults who are citizens or are lawfully residing in the US; have been uninsured for at least six months; and have been unable to get insurance due to their pre-existing condition. (States' existing high-risk pools are not affected by these limitations.)

In late June, the government issued its interim final rule addressing several of the law's provisions that go into effect on September 23, including the elimination of pre-existing condition exclusions for children up to age 19, and other patient protections, such as the prohibition against retroactive rescissions of insurance policies, the ban on lifetime insurance caps, and restrictions on annual caps. A summary of this "Patient's Bill of Rights" can be found at http://www.healthreform.gov/newsroom/new_patients_bill_of_rights.html.

The policy team is working with partner organizations to develop comments on these and other proposed federal regulations with an eye toward making sure that they adequately address the needs of CYSHCN and their families. We welcome your questions and input about how these provisions might affect the families with whom you work.

While there is much work to do at the federal level to implement health care reform, there is also a lot to be done at the state level. A useful advocates' to-do list for the next 90 days, can be found on the website of Families USA at http://www.familiesusa.org/resources/tools-for-advocates/background-materials-june-10.html.

If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

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What's New with Family Voices

Become a Member of Family Voices!
Family Voices Membership Deadline Extended!
Please note: Due to the timing of the tragic loss of Polly Arango, the deadline for becoming a member of Family Voices in order to remain on the FV-Talk listserv has been extended to July 30th. Contact us at 888-835-5669 for details or go to www.familyvoices.org to learn more and sign up now!

Call for Session Proposals: FV & AMCHP National Conferences
The 2011 Family Voices National Conference will take place on February 12-15, 2011, at the Omni Shoreham Hotel in Washington, DC, in conjunction with the 2011 Annual Conference of the Association of Maternal & Child Health Programs (AMCHP). Both conferences will focus on the theme, Working Together to Improve Maternal and Child Health.

The Family Voices and AMCHP co-located conferences are the ideal venues to present your ideas, research, innovative programming, best practices, and effective outreach strategies to MCH and other public health practitioners, family leaders, researchers, federal officials, advocates, healthcare providers and directors of state programs.

Visit http://www.amchp.org/Events/amchp-conference/Pages/default.aspx to submit your proposal to present at the Family Voices conference, the AMCHP conference, or a shared session.

The deadline for session proposal submissions is August 23, 2010. You will be notified about the outcome of your submission by October 15, 2010.

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News You Can Use:
Resources and More
News you can use

Check MarkOil Spill Resources for Families

  • Louisiana Family-to-Family Health Information Center (LA F2F)
    Bayou Land Families Helping FamiliesThe LA F2F is working closely with the U.S. Department of Homeland Security to outreach to families affected or who may be affected by the oil spill.  They have up-to-date information on "ground-level" concerns and the needs of families with individuals with special needs , particularly children and youth. They also have a wealth of information on the claims process, safety information, health information and more in a variety of languages including English, Spanish, Vietnamese, French and Khmer.  Topics include information on how to deal with oil if you come in contact with it, how to file a claim, facts on the claim process, flyers for local open house information in affected parishes and more. Contact Karen Scallan at the LA F2F (1-800-331-5570). The LA F2F is a partner in the Our Home, Louisiana, a statewide coalition of organizations focused on the health and welfare of Louisianians affected by the crisis in the Gulf.

  • American Academy of Pediatrics (AAP)
    Up-to-date information on protecting infants and children from the effects of the spill can be found on the AAP's home page for Children and Disasters, designed to provide resources for professionals, families, and policy makers useful for all kinds of disasters.
  • Centers for Disease Control and Prevention (CDC)
    The Centers for Disease Control and Prevention (CDC) has created a web page of questions and answers about the oil spill for parents, along with links to state and federal resources.

Check MarkNew Report on Strategies to Increase the Voices of Families from Diverse Backgrounds
Strategies to Increase the Voices of Families  from Diverse BackgroundsThis new report from Family Voices of Wisconsin provides results from a project undertaken to better understand what families from diverse backgrounds identified as barriers to being partners in decision making and advisors to committees and councils.

Gathering this information from listening sessions held in communities and conference calls with African American, Hispanic/Latino, and Native American populations who have children or youth with special health care needs., Family Voices of WI has identified specific strategies to help families and organizations work together, including an organizational checklist on recruiting and supporting parents from diverse backgrounds for advisory roles. This new report from Family Voices of Wisconsin provides results from a project undertaken to better understand what families from diverse backgrounds identified as barriers to being partners in decision making and advisors to committees and councils.

Gathering this information from listening sessions held in communities and conference calls with African American, Hispanic/Latino, and Native American populations who have children or youth with special health care needs., Family Voices of WI has identified specific strategies to help families and organizations work together, including an organizational checklist on recruiting and supporting parents from diverse backgrounds for advisory roles.

Download this report at: http://www.fvofwi.org/Publications/SharedParticipation.pdf.

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From Our National Partners
From our national partners


MCHB 75th Anniversary Celebration
MCHB 75th AnniversaryOn Wednesday, October 20, 2010, the Maternal and Child Health Bureau (MCHB) will hold a special Federal/State Maternal and Child Health Partnership Meeting in Washington, DC to commemorate the 75th Anniversary of Title V of the Social Security Act and in recognition of the rich history of its programs. Check with your Title V program and offer to participate in planning a local celebration in your state. Read the official invitation letter, view the save the date flyer and find out more information on the event at http://www.hrsa.gov/ourstories/mchb75th/.

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Special Highlight: ADA Turns 20!

On July 26, 1990, then President George Bush signed the Americans with Disabilities Act (ADA). The ADA Preamble states that the law is intended "to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." It bans discrimination in employment, public accommodation, public services, transportation, and telecommunications. The act was amended in 2008 to broaden the interpretation of "disability," by expanding the definition of "major life activities" that might be affected by a disability. To read more about the history and specifics of the ADA, as well as information about anniversary celebrations, visit http://adaanniversary.org

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July is Juvenile Arthritis Awareness Month

July is Juvenile Arthritis Awareness Month

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Thank you for your interest in Friday's Child.  Should you have any questions about this newsletter, please email Peggy Curran