October 2011

October 20, 2011

October, 2011: Download a Printable Version here.

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Feature Story: Family Leaders Learn through a Leadership Institute

Family Leadership in the States: Sharing Data Over Time—South Dakota’s Lesson in Partnership Building

Legislative Corner: Washington Update

News from Family Voices:

From Our Partners:

News You Can Use:

New Round of Funding Announced for F2F HICs




MCH PHLIIf you are a family leader ready to take your leadership skills to the next level, consider applying for the next Maternal and Child Health Public Health Leadership Institute (MCH PHLI)! Through the University of North Carolina at Chapel Hill, two cohorts of family leaders—six the first year, and six this year—have had this unique opportunity each of the past two years to strengthen their leadership and management skills through an executive-education program. Family Voices has worked closely with the program developers to ensure the full participation of family leaders alongside mid-career MCH professionals from across the country. Training is provided through onsite retreats in North Carolina as well as distance education opportunities, designed to improve leadership capacity and skills that engage and motivate others.

Family Leaders who have participated in the Leadership Institute have given the program high marks. Janet DesGeorges, a Family Fellow from last year’s cohort, noted that much of the information provided in the Institute is based on successful business models, and key to the leadership training is how it helps participants to apply the lessons in multiple settings. For Janet, training on conflict resolution was particularly helpful in her role as Director of Hands and Voices, a non-profit organization for families of children who are deaf or hard of hearing. Janet also praised the variety of ways in which the Institute provides training and information, for example, through discussions, webinars, conference calls, and individual coaching throughout the year.

Sherry Richardson, another Fellow from last year, praises the concept of intentional leadership—the need for a leader to be well-prepared in advance – as well as how the Institute provides this opportunity. For Sherry, learning about her own leadership style was a key outcome. “I’m a better manager of people. I’m helping others lead; I’m being proactive, and I’m even using the principles in my own family.” Sherry is currently a Family Voices Regional Field TA Coordinator.

Self-assessments, including the Myers-Briggs personality test, conducted by trained interpreters, allow for a deep learning process, and an appreciation for not only your personal style, but that of those with whom you work. The result is a more rounded leadership team. Marcia O’Malley, one of this year’s cohort, added, “All of the assessment tools delve into what makes you tick. In whatever world we choose to be in, we have to know ourselves. I have really learned a lot of interesting things about how I approach my relationships, at work and with my family—how I blend all of them, and find balance. It is a tremendous way to bring insight.” Marcia, former Executive Director of Family Ties of Nevada, is a member of the Family Voices Board of Directors.

Jennifer Bolden Pitre, currently a Project Director at Statewide Parent Advocacy Network in New Jersey and another current Family Fellow, described the camaraderie of fellow teammates that she can reach out to for help. “It’s a wonderful learning experience that wraps its arms around you, and keeps pushing to make you grow.” 

Six family leaders have completed the training, five more are currently in the process. Five family leader slots are available for the 2012-2013 Leadership Institute. Applications will be accepted beginning November 1 through February 1. Family Leader applications are received by the Institute and reviewed and evaluated by Family Voices. If you are interested in the Institute and have additional questions, please contact Karen Anzola (kanzola@familyvoices.org) or visit www.mchphli.org. The Institute is free for family leaders, with costs covered by the MCH PHLI project through funding from the Maternal and Child Health Bureau (value approximately $10,000 per person).   

Family Voices is also committed to helping many family leaders learn from the resources of the MCH PHLI. Check out the leadership resources available on the MCH PHLI website, including free modules on such topics as Cultural Competence and Global Leadership and Social Marketing. (See www.mchphli.org/?page=try_a_module.)


Family Leadership in the States

Family Leadership in the States


Sharing Data Over Time—South Dakota’s Lesson in Partnership Building
Family Partnerships based on relationships cultivated over time help partners develop multiple ways to accomplish common goals. The partnership between the South Dakota Parent Connection (SDPC), home of South Dakota’s F2F HIC, and their state Department of Health (DOH)/Children’s Special Health Services (CSHS) illustrates the point.

South Dakota Parent Connection VideoLisa Sanderson, the Family to Family Coordinator for SD Parent Connection, recently spoke of their on-going partnership with the DOH. “We have been building our relationship with our state DOH over the past 4 years, providing data for Title V Block Grant applications, sharing our F2F Data Reports, offering assistance and support.”

Lisa is quick to acknowledge that this partnership is a win-win situation, with both partners benefiting. The message to Title V partners:  Family leaders can help you connect with underserved families and extend your reach in times when resources are scarce. Parent-led organizations benefit as well by having a seat at the table. In this case, SD Parent Connection received funds from the DOH to continue their outreach efforts to SD families with CYSHCN.

The quality of data that SDPC collects and shares with DOH has been a key aspect of the partnership, according to Lisa. SDPC provides details, including numbers on the families served and explanations of areas of need based on the various activities that the Parent Connection is engaged in; the data is organized around the core outcomes for the National Performance Measures required in the Block Grant Application. “We know how important the data is—without good information, you can’t make good decisions. Through our data, we verify that we are having an impact and serving the families that Title V is authorized to serve.” Reports include specific information on the many ways SDPC provides individual assistance to families of CYSHCN. In addition, SDPC data reports describe ways SDPC connects families to the physical, mental, and dental health services and financial supports they need, as well as how SDPC empowers families to partner with professionals to ensure child and family needs are met. The reports are a detailed account of the many ways that SDPC reaches families of CYSHCN—and how this outreach dovetails with the mission of the Title V program.

Lisa’s advice for others? “Be persistent. Think ‘How can we work together to benefit our mutual goals?’ and ‘How can we support family centered care and parent involvement in decision-making?’” She adds, “DOH doesn’t only hear from us when we want something.

Everything is about relationships—we have to be at that table.” Clearly, SD Parent Connection efforts are appreciated.   Visit SDPC at http://www.SDparent.org.

Legislative Corner

Legislative Corner

Washington Update
Super Committee
:  As reported in the last Friday’s Child, Washington is focused on the deliberations of the “Super Committee” – 12 Senators and Representatives who are charged with finding over a trillion dollars in deficit reduction through any means they choose. The Super Committee will make recommendations to Congress by November 23 and Congress must vote on them by December 23. Family Voices and other advocates are working to educate the Committee and other Members of Congress about the importance of Medicaid to children with special health care needs. 

Essential Health Benefits:  On October 7, the Institute of Medicine issued a report to the Secretary of Health and Human Services (HHS) about methods that might be used to develop the package of “essential health benefits” that must be included in any health insurance plan sold through the Exchanges created under the health care reform law. The essential benefits package is supposed to be based on what a “typical” employer plan would offer, but also must cover ten general benefit categories listed in the law, including (of relevance to CYSHCN) “habilitation” services. The IOM has recommended that the Secretary model the EHB on what a typical small employer might offer and that the cost of benefits be a constraining factor so that premiums do not become unaffordable. The IOM report can be found at:

Family Voices is working with other advocates for people with disabilities to ensure that habilitation services are included in the essential health benefits package that will be developed by the Secretary in the coming months. Family Voices participated in a “listening session” about essential health benefits that HHS held for consumer advocates on October 20. 


Contact Brooke Lehmann (Blehmann@familyvoices.org) or Janis Guerney (Jguerney@familyvoices.org) if you have any questions.


News from Family Voices


Welcome, Melanie Rubin!
Family Voices welcomes a new staff to a new position: Melanie Rubin is our new Communications Specialist, charged with supporting outreach and public relations—managing the Family Voices website, social media, press releases, advertising, and media relations.   Melanie brings more than 20 years of experience to the position in media, marketing, and communications. She’s worked for cable TV news, written books and scripts, and developed trainings for Productivity, Inc., Health Care Coalition, and Acupuncturists Without Borders.  Communications are in good hands with Melanie!  


CDC Survey—Deadline Extended to Midnight, October 24!
Thanks to all who encouraged parents to respond to the CDC survey-more than 2,800 family surveys have been completed, coming from nearly every state! Responses will help the CDC understand what families of CYSHCN know about flu prevention and treatment. The CDC would particularly like to encourage more Spanish-speaking families to respond to the survey, so the deadline has been extended to October 24th. 

To access the survey in English, please go to: http://www.orau.gov/caregiver-flu-survey/
To access the survey in Spanish, please go to: http://www.orau.gov/caregiver-flu-survey/Spanish-Version/

Questions? Contact Nora Wells (nwells@familyvoices.org).

Bright Futures Family Matters: Promoting Good Nutrition:
Check out the October issue of Bright Futures Family Matters. You’ll find tips for improving family nutrition, getting kids involved, and ways that communities can work to improve everybody’s health and well-being.

About Family-to-Family Health Information CentersNew Videos From the NCFPP:
Two new videos have been posted to the National Center for Family/Professional Partnership website.  About the NCFPP describes ways in which the NCFPP helps families, family leaders and partnering organizations.  About Family-to-Family Health Information Centers  is a video developed for the Child Health Day observance (October 3, 2011) which highlights the issues of families of CSHCN and the assistance provided to families by F2F HICS.


KASA webinar on ADA:
n case you missed the KASA Webinar on the Americans with Disabilities Act with KASA Leaders and Jan Garrett of the Pacific ADA Center, you can playback the recording at https://www323.livemeeting.com/cc/familyvoices/view.asx?scan=scanhff.


From Our National Partners


Healthcare Transition & College—It Doesn’t Have to be Learned the Hard Way
“Healthcare Transition & College—It Doesn’t Have to be Learned the Hard Way!” This episode of Got Transition Radio (Oct 26, 3:00-3:30 EDT)  features two people familiar to Family Voices, former KASA Board Member Mallory Cyr, and Eileen Forlenza, Director of the Colorado Family Leadership Initiative, Colorado Department of Public Health and Environment, who will be providing insights for high school students—with and without special needs—who are making the transition to college. They’ll also be asking participants to share their stories and what they’ve learned. Space is limited, so reserve your spot at https://www1.gotomeeting.com/register/499336272.
Baby’s First Test Website Launched
Want to know more about newborn screening? The Genetic Alliance’s new website provides state-specific information about the screening process—how it is done, what is screened for, and where to get more information—especially if a screen test is positive. Go to: www.babysfirsttest.org.

2012 Baby’s First Test Challenge Awards
Several awards up to $20,000 each will be awarded to organizations who integrate Baby’s First Test into new or existing outreach, engagement, or educational efforts. The full Request for Proposals is available at: www.BabysFirstTest.org/innovation, and will be accepted until November 7, 2011, 6:00pm EST. The Alliance will consider proposals from nonprofit organizations, public health groups, research institutions, and private-sector companies.

News  You Can Use

News You Can Use


KEEPING RECORDS—Thanks to the Links Digest, from Parent to Parent of New York State (NY’s F2F HIC), for these links

October is
Disability Employment Awareness Month




Family-to-Family Health Information CentersNew Round of Funding Announced for F2F HICs.
Applications are now being sought for Family-to-Family Health Information Centers in the states of AK, AL, AR, IA, ID, KY, NM, OH, SC, WA, WV and WY.  Eligible applicants include public and private entities and must have experience related to the “purpose” of F2F HICS; have a focus on health for CSHCN; and be family-staffed/run.  Applications are due by December 16, 2011.  Read the announcement or download grant tools and resources from the NCFPP website.



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