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In Memoriam
Family Voices is deeply saddened to share with you the passing of Laura Royal, former FV Network member in Georgia and a champion for children with special health care needs. Laura, a fighter throughout her own illness, died Saturday, February 3, 2007, at her home in Vienna, GA; she was 42 years old. Cindy Arceneaux, former FV GA Network member, shared stories of Laura and her tenacity—“I'll fondly remember her bringing her then preschool son to the meetings of the Georgia state Board of Medical Assistance. It was hard for them to discount the ability of kids with special health care needs and disabilities with Zach cheerily singing songs, asking questions and greeting them whenever possible. Laura's life definitely had a positive impact on others. Can we ask for any more than that?” Our thoughts are with Laura’s family and friends.

Extended Family Voices Family Grows!
Cindy White, former Family Voices Director of Fiscal Operations, and her family are celebrating the recent addition of not one, but two, grandchildren—Nathaniel Canales, born February 4, 2007, and Zachary Seale, born February 13, 2007. Congratulations and best wishes to Cindy and her family!

 

SAVE THE DATE!
Family Voices 15th Anniversary Gala Celebration and National Conference

Join Family Voices in our nation’s capital for a celebration of 15 years of family/professional partnerships and accomplishments! Meet with veteran and emerging family and youth leaders and national and state partners from across the country. Gain new understanding of current critical issues: Medicaid policy, information technology, family-centered care, quality assurance, wellness, transition, youth perspective, cultural competence and much more. Use your voice to impact the future of health care for children and youth with special health care needs!

Don’t miss this opportunity to explore examples of family-centered best practices for improving systems of health care for children and youth with special health care needs. Working together as families, partners, and communities, we can move forward the agenda of health care and build a better future for our children.

FEATURED EVENTS:

• May 23, 2007: Leadership Institute, a 1-day training at the Grand Hyatt (registration limited)
• May 23, 2007: 15th Anniversary Gala Celebration, an evening of celebration at Decatur House
• May 24-26, 2007: National Conference, 2 1/2 days of keynote sessions, workshops, networking opportunities, and more at the Grand Hyatt

Watch for more information and on-line registration at www.familyvoices.org.

 

News You Can Use:
Resources and More

Two Youth Organizations Share Important Documents

The National Youth Leadership Network (NYLN) and the Kids As Self-Advocates (KASA) project, two national programs for youth with disabilities, have come together to create an information packed web page that includes links to three new documents—“Respectful Disability Language: Here’s What’s Up!”; “Accessibility and Accommodations: Making Opportunity Accessible to All”; and “Document Accessibility Checklist.” This link shares these documents with others who also care about these issues: http://www.fvkasa.org/nylnkasa/index.php

Kids As Self Advocates (KASA) is a project created by youth with disabilities for youth (ages 13 to 24). KASA believes young people with disabilities have control over their own lives and futures. KASA teaches youth about their rights, gives peer support, gives trainings and works to change the systems that affect the lives of youth.

The National Youth Leadership Network (NYLN) is for young leaders with disabilities (ages 16 to 28). NYLN helps youth at national, state, and local levels. The NYLN Governing Board leads the Network. The NYLN mission is about leadership and education. This organization focuses on education, employment and independence.

NYLN and KASA are different, but they agree on some important things:

• Making sure everyone uses respectful disability language; and
• Helping people know how to make things accessible.

Information about other activities of NYLN and KASA is available at http://www.fvkasa.org/nylnkasa/index.php. Please contact these organizations to ask questions, to share ideas, or to work together. Welcome to this powerful network of youth voices!

KASA is a project of Family Voices.

New/Updated Materials from the National Center for Parent/Professional Partnerships
Family Voices, Inc. through the National Center for Family/Professional Partnerships provides leadership on implementing the core component of a system of care for Children and Youth with Special Health Care Needs (CYSHCN), that is: Families will partner in decision-making at all levels and will be satisfied with the services they receive. To achieve this goal, Family Voices has developed the following publications to help families connect with Family-to-Family Health Information Centers and to help guide families and professionals in working together:

• Family-to-Family Health Information Centers (F2F HICs) is a brochure that provides a brief background of Family-to-Family Health Information Centers, describes the kinds of assistance they provide, and lists the contact information of current F2F HICs located within the states.

 

 

• Parents Partnering with Managed Care Plans is a 7-page booklet of topics and questions about services for CYSHCN. It can help to guide discussions among families and managed care plans and suggests ways to partner to improve services for this population..

 

 

• Families Partnering with Providers is a 7-page booklet of tips on communicating with your child’s providers focused in the following areas: Preparing For An Office Visit, Talking With Your Child’s Provider, Learning More (after the visit with the provider), and Helping Your Provider Help Other Families.

Please call the Family Voices National Office at (888) 835-5669 to order hard-copies of these materials. More information about the National Center for Family/Professional Partnerships is available at www.familyvoices.org/info/ncfpp/

National Conference of State Legislatures: Children’s Health Insurance Reform Webpage
One of Family Voices’ partner organizations—the National Conference of State Legislatures (NCSL)—has a section of their website devoted to children’s health coverage. As you know, many states have significant initiatives in the planning stages or actually underway. Check their site to see state-by-state information- http://www.ncsl.org/programs/health/kidsins.htm

UnitedHealthcare Children's Foundation to Offer Medical Assistance Grants to Families Nationwide
The UnitedHealthcare Children’s Foundation, a nonprofit 501(c)(3) organization that strives to enhance quality of life of children who have health care needs not fully covered by commercial insurance, is offering support to meet the needs of children across the United States with assistance grants for medical services not fully covered by health insurance.

Parents and caretakers across the country will be eligible to apply for grants of up to $5,000 for healthcare services and equipment that will help improve their children's health and quality of life. Examples of the types of medical services covered by UHCCF grants include speech therapy, physical therapy, and psychotherapy sessions; medical equipment such as wheelchairs, braces, hearing aids, and eyeglasses; and orthodontia and dental treatments.

Any child 16 years old or younger living in any UnitedHealthcare region of the United States and in need of financial assistance for healthcare services will be considered eligible for a grant. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health insurance plan.

For program guidelines and eligibility requirements, visit the UHCCF Web site at www.uhccf.org

February: National Children’s Dental Health Month
February is National Children’s Dental Health Month. This year, the American Academy of Pediatric Dentistry and the Children’s Dental Health Project, partners in the Alliance for Information on Maternal and Child Health seek your support in getting the message out: “Baby teeth are important.” Dental disease, while wholly preventable, continues to be the most common chronic disease of children. Despite an overall decline in dental decay rates over the last thirty years, recent data highlight the need for more rigorous early oral assessments and prevention efforts, beginning with maternal education. Data from a national 1999-2002 survey reveal a marked increase of 15 percent in dental decay among our youngest and most vulnerable children, those ages 2 to 5. More than one in four pre-school age children have experienced the disease. This represents nearly 600,000 additional pre-school aged children, compared to results from the former 1988-1994 survey. Since cavities in primary (baby) teeth are a strong marker for permanent (adult) tooth decay, it is important to note that as this cohort of children age, treatment needs will skyrocket. For additional information on Improving Perinatal and Infant Oral Health, please contact Project Director, Mary Foley at mfoley@cdhp.org or visit www.cdhp.org.

Genetic Alliance Annual Conference Call for Workshop Abstracts

The Genetic Alliance Annual Conference brings advocates, health professionals, policy makers, industry representatives, researchers, and community leaders together each year for cutting-edge workshops, informative lectures, and insightful discussions. Genetic Alliance invites abstract submissions for workshops at our 2007 Annual Conference, themed The Year of the Advocate, which will take place July 27-29. Workshop content must relate to genetics information in policy, services, research, or education. Sessions are 90 minutes in length. For more information on guidelines for submission, please visit www.geneticalliance.org.

The Family Voices Store at Family Café—One Stop Shopping for Family and Friends

Looking for a way to honor a family member or special caregiver, or seeking just the right thank you gift? Consider making contributions to Family Voices through secure, on line donations, purchases of Family Voices Merchandise or purchases from Amazon.com through the link on our web home page. Simply visit our website, www.familyvoices.org, to make a donation or to learn more about how financial gifts are used. Donations may be sent directly to: Family Voices, 2340 Alamo SE, Suite 102, Albuquerque, NM 87106.

The Family Voices Store at Cafe Press— www.cafepress.com/shopfv has lots of fun FV t-shirts, mugs and more.

When buying books from Amazon.com, don’t forget to link to Amazon through the Family Voices website home page at www.familyvoices.org. A portion of the sales is given back to Family Voices.

Online Survey about Health and Wellness for CSHCN

The Family Voices and Tufts University research team invite you to complete an anonymous online survey about Health and Wellness for Children with Special Health Care Needs. The team is looking for as many responses as possible from families who have children, 6 - 18 years old, with special health care needs (this includes special mental health/behavioral/emotional needs).
Please go to http://go.tufts.edu/familymatters to access the survey.

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