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The Family Voices Network continues to grow! Welcome to Wendy Ward and Mary Stough in North Carolina. Wendy, mom to three girls, is a parent educator at Exceptional Children’s Assistance Center (ECAC) in Davidson, NC, and works with the NC Family to Family Health Information Center. Wendy is a member of the NC Medical Home Initiative and NC Kindergarten Health Assessment Work Groups. Wendy partners with many agencies and organizations including the Arc, Family Support Network, Department of Public Health, March of Dimes, Healthy and Ready to Work. She advocates for NC children who are uninsured/underinsured.

Mary, from Wilmington, NC, is mother to two daughters and is an advocate and business owner in SE NC. She is a member of the Family Advisory Council, Chairman for First in Families, and is involved with the Emergency Task Force in Wilmington. Mary is an ex-officio member of the New Hanover County Exceptional Children’s Board. Mary would like to see more access to and coordination of support services for children and youth with disabilities. Join us in welcoming Wendy and Mary to Family Voices.

 

CALL for PRESENTATIONS!
Family Voices National Conference

Family Voices invites you to participate in an unparalleled opportunity to reach an audience of committed advocates for children’s health. At this time Family Voices is soliciting abstracts/proposals for presentations, workshops, roundtable discussions or panel participation that highlight successful, innovative strategies for best practices and shared decision-making. We are particularly interested in sessions that:

• build capacity and competence
• promote collaboration
• respect and value diversity
• support and nurture parent and youth leaders
• strengthen family, youth, and community partnerships

Please visit the Family Voices website for more information or contact Leau Phillips or Betsy Anderson. All abstracts/proposals must be received by February 10, 2007.

 

News You Can Use:
Resources and More

Winter Weather Alert—Emergency Resources
With winter weather still bearing down on many parts of the country and some ensuing power outages, we want to remind you of an informative one-pager available from Family Voices--Emergencies and Disasters: Keeping Children and Youth with Special Health Care Needs Safe. This clear, concise document offers tips for preparing an emergency plan for your child. Every place your child goes should have an emergency plan for your child. Check it out at www.familyvoices.org/pub/general/Disasters_&_Emergencies.pdf

Several states have developed disaster preparedness guides chocked full of critical planning information and resources. Florida Institute for Family Involvement (FIFI) has an excellent guide--Disaster Preparedness for Families of Children with Special Needs--available in both English and Spanish, that you may download and print-- www.fifionline.org/images/PDF%20Files/Disaster%20Planning%20for%20CYSHCN.pdf.

The Texas Department of State Health Services, Children with Special Health Care Needs Services Program has adapted the FIFI guide for Texas Families--Emergency and Disaster Planning for Children with Special Health Care Needs. Go to www.dshs.state.tx.us/cshcn/pdf/emer_plan.pdf.

Also, as a service to first responders, emergency managers and people with disabilities, the National Organization on Disability's Emergency Preparedness Initative (EPI) has developed an interactive map of federal, regional, state, and local disability-related emergency management resources. Go to http://nod.org/EPIResources/interactive_map.html. By clicking on the map or on the corresponding links, you may view a list of links to disability & emergency preparedness resources in your state.

The map houses information on your regional branch of FEMA and ADA&IT Technical Assistance Centers, your Governor and any state disability resource agencies, a directory of ILCs and SILCs within your state, your state Citizen Corps and American Red Cross Chapters, as well as links to your state and local Emergency Management Agencies. The map also includes a list of federal disability and emergency preparedness resources, including government agencies and non-profit organizations. If you would like EPI to place a link to your organization within this map, please contact them at epi@nod.org.

Congressmen Kennedy and Ramstad Embark on Nationwide Tour to Promote Mental Health Equity Bill
WASHINGTON- Congressmen Patrick J. Kennedy (D-RI) and Jim Ramstad (R-MN) are embarking on a nationwide tour, traveling to forums taking place in major cities all across the country. The national tour entitled, "The Campaign to Insure Mental Health and Addiction Equity," will hear testimony from ordinary American citizens whose lives have been touched by mental illness and addiction.

"Our goal is to compile testimony from Americans across the country in an effort to pass the most responsible and comprehensive federal equity bill possible,” said Congressman Kennedy. "Americans with these physiological diseases of the brain pay their premiums like everyone else and their insurance should be there when they need it, like it is for everyone else. Every family in America has, in some way, come face to face with the burden of these diseases and the difficulty in getting care. We pay enormously, as individuals and as a society, the costs of leaving theses diseases untreated. It's time for action."

The Congressmen are preparing to reintroduce federal legislation aimed at ensuring that health plans offer fair coverage for mental health and addiction care. The bill, called the Paul Wellstone Mental Health and Addiction Equity Act after the late Senator who championed the cause, had majority support in past Congresses but was blocked from consideration by House leadership. The new House Leaders have promised Congressmen Kennedy and Ramstad that they will bring the bill up for a vote.

"The American people should not be forced to wait any longer for Congress to knock down the barriers to treatment for mental illness and chemical addiction," said Congressman Ramstad. "Congress must hear their call and pass the Paul Wellstone Mental Health and Addiction Equity Act."

Additional forums are being organized across the country by Mental Health America (formerly the National Mental Health Association) and the National Alliance for the Mentally Ill (NAMI). Congressmen Kennedy and Ramstad will join other Members of Congress at scheduled forums in Minnesota, Maryland, Los Angeles, and Washington State leading up to Congressional hearings in Washington, D.C.

The Paul Wellstone Mental Health and Addiction Equity Act expands the Mental Health Parity Act of 1996 by requiring group health plans to offer benefits for mental health and addiction on the same terms as care for other diseases. The legislation closes the loopholes that allow plans to charge higher co-payments, coinsurance, deductibles, and maximum out-of-pocket limits and impose lower day and visit limits on mental health addiction care.

Forum Schedule*:

• Jan. 16 Providence, RI District of Rep. Patrick Kennedy
• Jan. 22 Minneapolis, MN District of Rep. Jim Ramstad
• Jan 29 Rockville, MD District of Rep. Chris Van Hollen
• Feb. 10 Los Angeles, CA District of Rep. Grace Napolitano
• Feb. 17 Vancouver, WA District of Rep. Brian Baird

*dates pending in many other locations

A Baby-Step toward Improving Perinatal and Infant Oral Health
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: “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 childhood risk assessment and prevention efforts, beginning with maternal education and suppression of disease transmission via saliva from mother to child. 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.

Dental disease (dental caries) is a preventable disease. Infectious in nature, once the bacteria (mutans streptococci) are transferred via saliva (i.e. sharing spoons, testing food temperature, etc.) from mother/caretaker to child, host risk factors in the child predict the development and severity of cavities— the adverse outcome of the disease—similar to high risk individuals with heart disease who suffer the adverse outcome—a heart attack. Policy makers can help by developing and promoting policies that increase access to oral health care services for pregnant women. Health providers and others interested in maternal and child health can help by educating women, particularly new moms, about the transmissibility of the disease and by promoting the importance of oral health and regular dental care during the perinatal period (before, during and after pregnancy) and in young children by age one. Primary care and prenatal visits provide an opportunity for maternal oral health assessment, education interventions and referral for routine dental care. Such interventions promote a coordinated multi-disciplinary effort to provide comprehensive, family-centered health care. 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/Projects/PPMCHResources.asp.

Children’s Health Care Town Hall Web Cast
Many thanks to all who helped make Families USA National Town Hall Meeting on Children’s Health Coverage a success! During the town hall meeting, Senators Max Baucus (D-MT), Orrin Hatch (R-UT), Jay Rockefeller (D-WV), and Gordon Smith (R-OR) expressed their bipartisan support for expanding children’s health coverage. If you missed this event, don’t worry. An archived web cast of the 35-minute national town hall meeting is available at http://ga3.org/ct/j1_47M11-zkr/Webcast.

ONE-STOP SHOPPING

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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Happy New Year! Wishing you health and happiness in 2007!