Friday's Child

In this issue of Friday's Child, we feature several exciting initiatives from Family to Family Health Information Centers in four states: NJ, PA, MA, and SC. Thanks to these organizations and all parent leaders who work tirelessly to be sure the voices of families of CYSHCN are heard in their communities, states and in the halls of Congress.

NJ Family to Family Health Information Center:

¡Tradúcelo Ahora! (Translate Now!)
Contributed by Mercedes Rosa and Diana Autin, Family Voices of New Jersey, NJ Family to Family Health Information Center

Through a grant from IBM, the Statewide Advocacy Network of New Jersey (SPAN NJ) is pleased to offer access to Tradúcelo Ahora (Translate Now), which offers the ability to translate emails and websites from English to Spanish and Spanish to English, to Family Voices chapters and network members and Family-to-Family Health Information Centers throughout the United States.

¡Tradúcelo Ahora! (Translate Now!) is IBM's grant program designed to open up a world of services and information on the Internet for Spanish speakers, using automatic English to Spanish translation. This translation software is helping thousands of Latinos – many of whom are recent immigrants – find information on jobs, health and human services, and other resources quickly and easily.

Tradúcelo Ahora breaks down the language barrier between people. An email sent in English can be translated into Spanish. When a person responds in Spanish, it will be translated into English. The service also has the ability to translate websites from English to Spanish. This capability will help Spanish speakers become effective advocates, find information on jobs, health, human services and other resources quickly and easily.

Spanish-speaking families in New Jersey families are connected to the service and now...

Parents can communicate with their child's teacher and schools.
Parents are communicating with Early Intervention Service Coordinators and Child Study Teams.
Doctors and patients can share information regarding medicine and appointments.
Parents are looking for jobs and can find job listings in their language.
Parents can do research concerning their child's disability and other needs.
Parents are finding support groups and other resources.
Parents can network with other families and professionals.
Parents are now informed and connected to statewide activities.

Spanish-speaking families who are using Traducelo Ahora report:

"It’s fabulous! So quick and easy to use. It's a great tool!"
"It has opened up my world! I am now able to communicate beyond my limitations. Thank you, Diana and SPAN!"
"I cannot believe how many resources are available! I have so much I need to learn. I can simply translate and print the material that will help equip me to become a better advocate for my child."
"WOW! I am connected! I have an email address now and enjoy to surf around on the Internet! I am getting so many great resources on upcoming state events from SPAN staff."
"It was so difficult before to connect with my child's doctor over the phone but now I can send an email and now he responds promptly. I can now send in my questions and concerns before scheduled visits so that I make sure to get the answers that need about my child's health and medication. I really feel more empowered now that I am able to get my concerns addressed."
"Agencies can hear our voices now! We contacted a few agencies to request trainings for Spanish speaking families and now they are listening."
"I never knew how much information I was missing out on, now I can be more informed and connected with my child's disability and what's available as far as intervention. I can now be more aware of upcoming activities & support groups available in my child's school, community and state."
"We thank SPAN for helping us to communicate more effectively."

Would you like to learn more? Participate in the national Family Voices’ conference call on Thursday, February 28, 2008, from 3:00-4:30 PM ET. More information will be shared via the Topical Call Center on the Family Voices website.

PA Family to Family Health Information Center:

Parent Education and Advocacy Leadership Center (PEAL)
by Joan Badger, PA Family to Family Health Information Center

Sharing information about the F2F Project in PA with Medical Home Partners
Pennsylvania’s Family-to-Family Health Information Center (F2F HIC) at the Parent Education and Advocacy Leadership (PEAL) Center in Pittsburgh was invited to present at the November monthly coordinating conference call of the Pennsylvania’s Medical Home Initiative, known as EPIC (Educating Practices in Communities Integrated Care). The participants included pediatricians, care coordinators, and parent partners from the practices. EPIC-IC partners were interested in learning about the services offered by the F2F HIC, had questions about pending changes in state policies and programs, and wanted to know how they should advise patients’ families. This presentation has helped to establish the PEAL F2F HIC as a valuable source of information for the EPIC practices and has resulted in invitations to present on topics of interest for parents in their practices.

Parent Leadership Institute
Pennsylvania’s F2F HIC at the PEAL Center has embarked on an exciting eight-month long parent leadership project. The 25 Parent Leadership Institute participants were selected from over 100 applicants from across the state. All Parent Leadership participants have children with special health care needs. In November, participants met face to face in Harrisburg for a weekend session with presenters Bobby Silverstein and Diana Denboba. Each participant has chosen an area of interest and is developing plans to improve care and services for CSHCNs and their families. Following the first weekend session, there have been monthly topical conference calls to give parents tools to be more effective leaders in their communities and state. There will be a second face to face session with the group in March that will be packed with expert presenters in the areas of cultural competence, communication and negotiation, health law and change strategies.

MA Family to Family Health Information Center:

Massachusetts Family Voices
by Beth Dworetzky, MA Family to Family Health Information Center and Mass Family Voices

Joining Voices Conference
For all the convenience of making phone calls, sending e-mails and/or connecting with each other through virtual communities, there’s nothing quite like the excitement and synergy generated when parents of children and youth with special health care needs get together in person. The Joining Voices Conference on November 29, 2007, hosted by the Massachusetts Family-to-Family Health Information Center (MA F2F HIC), a project of Mass Family Voices @ Federation for Children with Special Needs, was just such an opportunity.

Participants at Joining Voices Conference

Participants at Joining Voices Conference

The goal of this annual, statewide event is to provide an opportunity for parents of children and youth with special health care needs to learn specific skills to help them be effective partners in decision-making with health care providers, other providers, systems of care, and with policymakers. For the second consecutive year, the MA F2F HIC was pleased to welcome a keynote speaker from one of the six National Centers for Technical Assistance. Last year, Patti Hackett, co-director of the Healthy and Ready to Work National Resource Center attended. This year, we were honored to have Suzanne Bronheim, Senior Policy Associate at the National Center for Cultural Competence, give the keynote address about creating partnerships within a cultural context and facilitate an afternoon workshop.

We were pleased to host an additional guest. Diana Denboba, Branch Chief, Integrated Services Branch, Division of Services for Children with Special Health Needs, MCHB/HRSA and our project officer, joined us for the day. In addition to giving an informative presentation about the origin, purpose and goals of the Family-to-Family Health Information Centers, illustrated with examples of the innovative work done in other states, it was an opportunity for her to meet Massachusetts families and see an example of the work being done by the MA F2F HIC.

Afternoon workshops focused on parent/professional partnership opportunities in Title V programs, at pediatric practices and in effecting legislative change. Participants left feeling empowered to work with their professional partners as well as with insight into and information about how to engage families from different cultures.

SC Family to Family Health Information Center:

by Les Barker, Family Connection of SC

'Of Hopes & Dreams' Conference in South Carolina
heart

Family Connection of SC, home to FV SC and the SC Family to Family Health Information Center, is excited to announce that the 2008 'Of Hopes & Dreams' conference will be held on Friday, February 22 and Saturday, February 23 at Brookland Banquet & Convention Center in West Columbia, SC. 'Pulling Together ... It Works Wonders!' is the theme of this year's conference which will feature a wonderful roster of quality speakers and workshops. Now a two-day conference, participants will be able to participate in a four-hour 'intensive workshop' on one of three topics on Friday and three workshop sessions on Saturday. To learn more, click here to download the conference brochure our visit their website.

Network News

Family Voices said “so long” to Kelly Stahlman, FV CO in December. Kelly has been associated with Family Voices CO for over 15 years, the past three years as Policy Coordinator, before becoming a Network member last fall. Kelly will continue as a FV CO representative on two appointed boards. Her leadership and passion for health care reform will be missed!

Dina Castro, who recently relocated to Colorado with her family, has joined Family Voices of Colorado as a Network member. We’re thrilled she didn’t ‘stay gone’ long!

HIGHLIGHTS

From Our National Partners

The Mountain States Genetics Regional Collaborative Center (MSGRCC), which includes Texas, Arizona, Colorado, Montana, New Mexico, Nevada, Utah, and Wyoming, is featured in the December 2007 Texas Health Institute’s (THI) newsletter. Click here to read about the Regional Genetics Meeting and the release of the 2007 Biannual Publication, The Genetic Drift. Click here to learn more about the MSGRCC.

The Champions for Inclusive Communities e-newsletter is now available. Champions also has a series of 12 issue briefs on a variety of topics related to implementing community-based systems for CYSHCN and families. The issue briefs were developed based on the results of the Champions for Progress multi-state meetings. Each is available in PDF format. Click here to learn more.

The AAP Adolescent Health Partnership Project, a Partners in Program Planning for Adolescents grantee, is sponsoring the following free Webinar: Communicating in Adolescence: Building on Strengths While Addressing Risks
Wednesday, January 30, 2008
9:00 AM PT/ 10:00 AM MT/ 11:00 AM CT/ 12:00 Noon ET
This 90-minute audio conference will help pediatricians, nurse practitioners, internal medicine and family practitioners, nurses and office staff learn how to incorporate a practical, strength-based approach in interviewing and intervening with adolescents.
Speakers:
Paula Duncan, MD, FAAP and Kenneth Ginsburg, MD, MS Ed, FAAP

Click here to learn more and register for the event. If you have any questions about this educational event, please contact Charlotte Zia, Program Manager, at 847-434-7870 or czia@aap.org.

The next 'First Tuesday' Urban Institute Forum will focus on children with disabilities, When Interconnected Needs Confront Fragmented Services: Are There Better Ways To Help Children With Disabilities? This forum will begin at 11:45 at the Urban Institute, 2100 M Street N.W., 5th Floor, Washington, D.C.

Panel participants include:
- Sue Badeau, executive director, Philadelphia Children's Commission, FV of PA
- Darcy Gruttadaro, Director, Child & Adolescent Action Center, National Alliance on Mental Illness
- Pamela Loprest, Principal Research associate, Income and Benefits Policy Center, Urban Institute; coauthor, Meeting the Needs of Children with Disabilities
- Merle G. McPherson, MD, former Director, Division of Services for Children with Special Health Needs, U.S. Department of Health and Human Services
-Richard Wolf, domestic policy reporter, USA Today (moderator)

This panel of experts will unravel the maze of programs and problems confronting children with disabilities and recommend some ways to better coordinate services for this special population.

Improving the quality and safety of pediatric health care is a concern to everyone, but especially to families with children and youth with special health care needs, as our children utilize considerably more health services and undergo more complex health procedures than their peers.

There's an exciting opportunity to learn and share - in depth - ways to improve the quality of pediatric health care in this country. The National Initiative for Children’s Healthcare Quality (NICHQ), an organization devoted solely to quality improvement in children’s health, is holding its annual Forum in Miami, March 19-21. More than 500 experts, including nurses, physicians, family leaders, researchers, government officials, and hospital administrators, will spend three days together learning about the research and data, exploring ideas that work, and sharing unique perspectives on ways to ensure that children receive the very best and safest health care possible.

If you are part of a Family Advisory Council at your hospital or primary care practice or are interested in learning how to create or revitalize an existing one, there is a Family Exploratorium dedicated to this important topic. Other conference strands will explore issues of family-centered care for children with chronic illnesses, patient safety, childhood obesity, and improvement and innovation.

To learn more about NICHQ and its Forum, visit their website.

News You Can Use:
Resources and More

KASA White Paper Featured in Fair Test Examiner On-Line Newsletter
In the current FairTest Examiner, an article on graduation tests includes discussion of PA, MD, NJ, CT, and WA, a report by KASA (Standardized Testing: What You with Disabilities Have to Say) and a link to a FairTest fact sheet. Click here to read the online article.

AAP Call for Nominations for the Cal Sia Award
The Council on Community Pediatrics (COCP) is now accepting nominations for the annual Calvin CJ Sia Community Pediatrics Medical Home Leadership & Advocacy Award, which recognizes pediatricians who have demonstrated clinical excellence, community action, and advocacy for children. This award honors those pediatricians who have exemplified leadership and excellence by advocating for and providing a medical home for all children, especially children with special health care needs. The deadline for nominations is 5:00pm (CST) on Friday, February 22, 2008. If you would like more information or have questions, visit the AAP website or contact Regina Shaefer, Manager, Council on Community Pediatrics (800-433-9016 x4787).