The Family Voices Board of Directors recently finalized the strategic directions that will guide our work to achieve family-centered care for all children and youth with special health care needs and/or disabilities over the next four years. As part of the strategic planning process, Family Voices also “updated” our tagline, mission and vision statements, and principles.
Family Voices is committed to the vision that every child and youth with special needs receive family-centered care and has defined 6 principles to guide our work in pursuit of this vision. These principles focus on:
The Family Voices Strategic Directions of infrastructure, policy, diversity, and funding will help chart a path to making the vision a reality.
For more information about these new strategic directions, download the Strategic Plan.
NOTE: It has come to our attention that the cover letter to the Family Voices 2008-2011 Strategic Plan sent via postal mail this month includes an incorrect phone number for the Family Voices National Office. Please note that the correct number is 1.888.835.5669.
Our sincere apologies for the mistake.
“Claire’s Law”—Family Advocacy in Action!
Meet Claire Puryear, the symbol of a newly passed law in Tennessee requiring universal newborn hearing screening. Claire was born two years ago with a profound hearing loss that went unconfirmed (though suspected by her parents, Michelle and Matt Puryear) for 5 months because of a lack of mandatory screening in Tennessee. Thanks to the Puryears, Claire now hears in the normal range after a cochlear implant, and Tennessee has joined 44 other states in passing legislation mandating hearing testing.
The Puryears researched the incidence of newborn hearing loss (33 babies born each day with hearing problems), as well as the efforts of other states to enact screening legislation, and took their story to state legislators.
The Puryear’s statement to the Tennessee legislators ends with this plea:
We know that we can’t change what happened to our daughter Claire. But with your help, we know we can change their [other children’s] lives. So when it comes time to vote on legislation regarding newborn hearing screening—we ask you to think of our daughter Claire—and vote “Yes” for mandated newborn hearing screening for the state of Tennessee. Help those children and parents get the information they so vitally need.
Perseverance, a belief in the power of family advocacy, and the love of a child came together for the benefit of the state of Tennessee.
To read more about Claire’s story, see her website.
Families Find Common Ground and Develop Leadership Skills
Thirty-two family leaders of children with special health care needs and disabilities and representatives from 4 agencies met at the Family Voices of North Dakota Leadership Institute in Edgeley, North Dakota, August 15-17. The event focused on both strengthening partnerships and health policy development on the state level, as well as increasing family awareness and understanding of the impact of health issues and services for children and youth with special health care needs.
Donene Feist Director of Family Voices of North Dakota stated, “We are very excited to offer families a new opportunity in advocacy for their children with special health care needs.”
Roxanne Romanick, Bismarck, North Dakota added, “This is a wonderful opportunity for families of children with special health care needs and disabilities to share their experiences, and develop new leadership skills. Mentoring one another is a key investment for our children.”
Mom and Purple Bus Kick-off VoteHealthcare.org Bandwagon Tour
Perhaps you’ve seen a brightly colored purple school bus this summer, crisscrossing the country with an important message about America’s health care system. Kathy McClure, an Atlanta mother and attorney, discovered through personal experience the serious gaps in this system.
Kathy’s son, Chris, has Type 1 diabetes and her daughter, Caitlin, developed epilepsy after a soccer accident. When her children entered their 20s, Kathy and husband Jay discovered that affordable health care is nearly impossible for those with “pre-existing conditions.”
The McClures were fortunate enough to be able to cover the health care expenses, but knew that for many families earning the national median income of $50,000 this would be impossible. And Kathy decided to do her part by traveling across the country to tell her story.
They purchased the school bus on eBay, fixed it up, set up a website, and hit the road. Together with friends and family, they are seeking to collect one million pledges to “Vote Healthcare” — a pledge that gives citizens the chance to say why health care matters to them.
Visit the Purple Bus Bandwagon Tour for more information.
Come Grow with Us!
Please join Family Voices in welcoming three parent leaders to our national network of family leaders. Both Maureen Casey and Kim Hegg-James are returning after being away. Maureen and her family moved to Phoenix a few years ago, and she joins Wendy Benz and Judy Walker as part of FV Arizona. Kim lives in Idaho, and is anxious to connect with families in the state who need help learning about and accessing services for their children. Shanna Capps, who lives with her family in the Raleigh area and is on staff with the NC Family to Family Health Information Center, joins FV North Carolina. Welcome, All!
Leolinda Parlin Selected to Serve on National Committee
Leolinda Parlin, parent leader with FV Hawaii and the Hilopa‘a Family to Family Health Information Center, has recently been selected as the Participant Representative for the National Children’s Study Steering Committee, National Institute of Child Health and Human Development at the National Institutes of Health. The National Children’s Study places a strong emphasis on the importance of community and participant engagement, and we are thrilled that Leolinda, as a member of the Steering Committee, is positioned to help the Study make decisions about reaching out to and engaging families. Congratulations, Leolinda!
You can now DONATE ONLINE, securely, to Family Voices!
Help get the word out to more families, reach out to new partners, and provide extended support to the Family Voices Network across the country with your contribution.
It’s easy: Just click the red button above to get started.
(As a 501(c)(3) organization, donations to Family Voices are tax deductible to the full extent of the law.)
WHEN: Monday, February 23, 2009
WHERE: Marriott Wardman Park Hotel
Washington, DC
Look for more information in a future Friday’s Child.
Share those smiles of your family with the world, through the 2009 Family Voices Calendar and other publications!
We want photos of families and of family members! We want parents and their children together! We want extended family! We want photos of children and youth!
Please send your family photos, suitable for publishing and wide distribution, to Rachel Rodriguez, Assistant Executive Director, for possible inclusion in the 2009 Family Voices calendar and other publications. Please be sure to attach a signed release form.
Family Voices is currently seeking a part-time person to work in the National Office (Albuquerque, NM) as a Development Assistant. This individual will assist with all aspects of organization’s resource development, including, but not limited to, special events, grant research and writing, donor solicitation and follow up, membership, and marketing.
Download the Job Description for more information.
The latest issue of Bright Futures: Family Matters newsletter is out—and it’s all about oral health. This issue, entitled Healthy Oral Health, offers parents resources and training information to enable you to release the parent leader within. This 1-pager is also available in PDF format, for you to print and distribute.
Download the Healthy Oral Health here or visit the Bright Futures for Families website to read past issues.
Bright Futures for Families, a project of Family Voices, is a national initiative for families and communities to promote and improve the health and well-being of children of all ages.
Becoming an Informed Citizen: Voting your Values
At age 18, young adults are given the right and responsibility to vote. This is a big election year, and young adults need to make their voices heard by speaking up for what they think is important. Young adults with special health care needs or disabilities have unique experiences and perspectives that should be shared with candidates for public office—whether they are running for President of the United States or mayor of a rural farming town in the Midwest.
Learning about the issues and the candidates’ opinions can help young voters—and the rest of us—make informed voting choices that can impact future policies.
Here are some websites that will help you learn more about the issues and the candidates.
Thanks to Ceci Shapland, Health and Ready to Work (HRTW) National Resource Center, and Trish Thomas, Family Voices, for contributing this topic and the websites!
New Online Education Program “Health Literacy” Training Available
The National Committee for Quality Assurance (NCQA) has announced a new online course in Health Literacy. This free 5 hour health care provider course, “Unified Health Communication 101: Addressing Health Literacy, Cultural Competency, and Limited English Proficiency,” can be taken for credit (CEU/CE, CHES, CME, CNE) or not for credit.
The course was designed and developed by the Health Resources and Services Administration (HRSA), and is jointly sponsored by NCQA.
Visit the HRSA website for more information.
Closing the English/Spanish Language Gap through Technology
As we’ve reported in recent editions of Friday’s Child, five thousand families served by Statewide Parent Advocacy Network (SPAN) of New Jersey now have access to new translation technology—¡TradúceloAhora! (Translate Now!). This software translates e-mails and Web pages bi-directionally (English-to-Spanish and Spanish-to-English). SPAN has been able to provide this software through a grant from IBM.
Featured by Odalys Molina in the June 23rd broadcast from New York’s Telemundo47 affiliate, the Spanish language television network, the success and impact of this program continues to be shared. “This important technology will help Hispanic parents that do not speak English interact with the people who teach and care for their children, bridging a key communication gap,” said U.S. Senator Robert Menendez. “!TraduceloAhora! not only improves communication, it includes non-English speaking parents in mainstream America so that they are aware of what is expected of their children and can offer them the support they need at home.” Yolanda Quintero, a Spanish-speaking parent who is using the program says, “It’s so quick and easy to use. I cannot believe how many resources are available. I can simply translate and print the material that will help equip me to become a better advocate for my child. It has opened up my world! I am now able to communicate beyond my limitations. I really feel more empowered now that I am able to get my concerns addressed.”
“Providing technology that helps eliminate the barrier between English and Spanish can allow for successful communication that can play a major role in the healthy development of every member of the Hispanic family,” said Stanley Litow, Vice President, Corporate Citizenship and Corporate Affairs, and President, IBM International Foundation.
For more information about IBM, please visit their website. More information about SPAN, the NJ Chapter of Family Voices, and the NJ F2F HIC, is available on the SPAN website.
Every 10 years, the U.S. Department of Health and Human Services (HHS) establishes national objectives, known as "Healthy People," for promoting health and preventing disease. These objectives address a broad range of health needs, including children and youth with special health care needs; encourage collaborations across sectors; guide individuals toward making informed health decisions; and focus attention on the impact of health services. Public participation is an important part of the process of developing these goals.
HHS held six meetings around the country this spring on Healthy People 2020 and now is the time to submit your comments on the proposed vision, mission, overarching goals, and framework. Written comments must be submitted by September 2 by visiting the Healthy People website. Comments submitted after September 2 and before September 15, 2008 will be considered by HHS but not reviewed by the Advisory Committee. You may also attend the Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020 Meeting, which will be held via the internet on September 4th and 5th. Click here to pre-register.
The Catalyst Center is conducting a survey to collect family stories about the financial impact of raising children with special health care needs, that will be used to show the importance of improving insurance coverage and financing. To learn more and participate in the survey, visit The Catalyst Center website. Deadline for completing the survey is September 5, 2008.
Also check out their recently posted new briefs on health care financing.
The Genetic Alliance is currently accepting applications for Advocates Partnership Program. This program will support 10-15 advocates to attend the American Society of Human Genetics Annual Meeting (ASHG), to be held November 11 – 15, 2008 at the American Society of Human Genetics in Philadelphia, PA. ASHG is the primary place to meet people from all parts of the human genetics arena, including research and industry. This is a great opportunity to participate in educational, scientific, and social discussions about the entire translational research pipeline. For more information, download the
