October 2009

October 09, 2009

Bracing for H1N1

CDC map of Flu Outbreaks Flu season is almost upon us and this year's season brings an increased threat to children and others due to the H1N1 virus. According to the US Department of Health and Human Services (HHS), "the H1N1 (Swine) flu virus may cause a more dangerous flu season with a lot more people getting sick, being hospitalized and dying than during a regular flu season."

Several key indicators to track the prevalence of flu across the country are providing evidence that families need to take this threat seriously and be prepared. As of September 26, 2009:

  • 27 states are reporting widespread influenza activity at this time (see map).
  • Hospitalization rates for confirmed cases of the flu influenza are higher than expected for this time of year for adults and children.
  • 60 pediatric deaths related to 2009 H1N1 flu have been reported to CDC since April 2009, including 11 deaths reported during the week of September 20th alone.

The American Academy of Pediatrics (AAP) has indicated that the flu poses particular concern for children with special health care needs. Children most at risk for developing serious outcomes include those with epilepsy, cerebral palsy, neuromuscular disorders, chronic respiratory diseases, moderate to profound intellectual disability, immune deficiencies, congenital heart disease, and metabolic and endocrine disorders.

What can families do? HHS recommends that children over 6 months receive the regular seasonal flu and H1N1 vaccination. Currently the H1N1 mist vaccine is available. This version is based on a live virus and is not recommended for children with asthma or immunosuppresion disorders. These children should receive the H1N1 vaccine by injection, which will soon be available. The CDC indicates that a preservative-free (single-dose) form of this injection vaccine can be requested. Children under 6 months cannot be vaccinated, and so other family member should receive the vaccine to reduce household spread of the virus.

Parents should be diligent in reminding their children to wash their hands frequently with soap and water for at least 20 seconds and to always use a tissue when they cough or sneeze. If symptoms do appear, early treatment with an antiviral medicine (within 2 days of symptom onset), particularly for young children or children who are at risk for developing serious outcomes, has been shown to be very effective. For more information, including where to obtain the vaccine and what symptoms to look for in your child, visit www.flu.gov. Additional resources are also available on the Family Voices website.

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Family Leadership in the States

Family Leadership in the States

heartBuilding Health Care Reform by the People for the People

The voices of families of children and youth with special needs around the country are helping legislators to understand our needs! Multiple families rose to the occasion recently when Family Voices received an URGENT request from the AAP indicating that the House Committee on Energy and Commerce, Subcommittee on Oversight and Investigations, needed to speak with families who had struggled to meet the medical expenses of their child with special needs, even though they were insured. An immediate turn-around time was necessary, as is often the case with requests from Congress, in order to carry "family stories" to our lawmakers. Family leaders Tara Robinson in California, Dawn Wardyga in Rhode Island, Donene Feist in North Dakota and Diana Autin in New Jersey, each quickly identified families willing to share their illustrative stories. Congressional staff had the chance to speak with at least one of the families. Many, many thanks to all for a willingness and capacity to help families participate in this critical process.

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Legislative Corner

Legislative Corner

heartBuilding Health Care Reform

As this is being written, the Senate Finance Committee is holding its long-awaited "mark-up" (committee consideration) of health care reform legislation. While advocates have many concerns about this bill, it has an excellent provision for continuation of funding for Family-to-Family Health Information Centers (F2F HICs)! Due to the hard work of the FV network, this provision was included in the "mark" (starting-point bill) of Chairman Max Baucus (D-MT). If ultimately enacted, it would continue funding for F2F HICs at $5 million per year for the next three years (federal fiscal years 2010 through 2012). Assuming the F2F HIC provision remains in the Finance bill (as expected), it must still face numerous hurdles in the Senate and House before becoming law.

As Family Voices indicated in a September 16 press release, health care reform legislation should be very helpful to CYSHCN and their families, as it is expected to eliminate pre-existing condition exclusions and annual/lifetime caps on benefits. It is important, however, that advocates continue working to ensure that the legislation limit out-of-pocket spending so that insurance coverage and services are affordable. Family Voices and other advocacy groups are also working to ensure that children, particularly those with special health care needs, do not lose benefits by virtue of being shifted to private insurance plans from Medicaid or the State Children's Health Insurance Program. For more information, please visit the FV website and click on Take Action for Health Care Reform.

If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

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What's New with Family Voices

Bright Futures: Family Matters-Healthy Sexual Development

For information on healthy sexual development, as well as tips and strategies for talking with your child about his or her sexuality, check out the latest edition.

Show Your Support for Family Voices by Becoming a Calendar Sponsor!

Family Voices 2010 Calendar

Contact Rachel Rodriguez to make a contribution to Family Voices and become part of the 2010 Family Voices Calendar. Four levels of contribution are available:

  • Exclusive Month Sponsor ($150)
  • Back Page Sponsor ($75)
  • Friend & Family Dedication ($25 for photo and/or one-line dedication
  • General Contribution (any amount)

Take advantage of this opportunity to honor your loved ones while contributing to Family Voices. You will receive one complimentary copy of the calendar.

Family-Centered Care Tools

Christy Blakely, Renee Turchi and Nora Wells presented a session on "Improving Family-Centered Care through Self Assessment: A Tool for Families and Providers" at the Institute for Family Centered Care Conference in Philadelphia in August. The session included a brief history of fcc, development and piloting of the FCC Assessment Tools and examples of tool uses. For a copy of the ppt or tools, please contact Nora Wells.


A new feature has been added to the KASA website. "What's New" will share the latest youth-written tip-sheets and resource guides and as well as updates about all the of the exciting activities of KASA members. Check it out!

News You Can Use:
Resources and More

Check MarkMCH Library Knowledge Path: CSHCN
Looking for resources? A wealth of information to support systems of care for CYSHCN that are family-centered, community-based, coordinated, and culturally competent is available through the MCH Library Knowledge Path: CSHCN. Content areas include early intervention, financing services, rehabilitation, screening, and transition.

Check Mark"Including Samuel" Film on Public TV
Dan Habib's award-winning personal documentary about efforts to include his son Samuel in all aspects of society is being shown around the country this fall on Public TV stations. To read about the film, check local viewing times, and download a Viewer's Toolkit, go to www.includingsamuel.com.

Check MarkKaiser Family Foundation Report on Health Benefit Packages and Health Reform
Check out a new Kaiser report, "Children and Health Care Reform: Assuring Coverage Meets their Health Care Needs." This report focuses on potential coverage gaps for children with multiple health challenges in families with low-to-moderate incomes.

Check MarkCenters for Disease Control and Prevention Parent Portal
The CDC has created a new web resource for parents to provide a one-stop location for information on raising healthy children. The CDC Parent Portal, in addition to health and safety resources, also includes disease and condition information, as well as developmental milestones.

Check MarkNational Family Caregivers Association and Care.com-State of Care Survey
Take a few minutes to fill out this anonymous survey from the National Family Caregivers Association and Care.com to provide your input on the challenges families face in seeking quality child care and special needs care.

Check MarkKey Findings on SCHIP
A new issue brief,"What Has Been Learned about Expanding Children's Health Insurance?" from the Children's Health Insurance research Initiative (CHIRI) highlights key findings on SCHIP:

  • Most SCHIP enrollees were uninsured prior to SCHIP enrollment.
  • SCHIP improved health care access and quality for low-income children.

Learn more on the Agency for Health Care Research and Quality website.

Check MarkState Health System Scorecard Report
The Commonwealth Fund Commission on a High Performance Health System's second state scorecard indicates sharp differences in access, quality, avoidable hospitalizations, and cost across U.S. The majority of states made gains in children's health coverage-a result of federal and state support for the Children's Health Insurance Program (CHIP). Check out the report: Aiming Higher: Results from the 2009 State Scorecard on Health System Performance.

Check MarkCHIPRA
The Children's Health Insurance Program Reauthorization Act (CHIPRA) of 2009, signed by President Obama on February 4th, authorized new Federal funding targeted at reaching out to children who are eligible for Medicaid or CHIP but have not enrolled. F2F HICs in NJ, KS, OR are partnering with their state grantees. Download a list of state grantees.

From Our National Partners

Champions for Inclusive Communities

Champions would like to know more about family experiences with care coordination, particularly those who may receive care coordination from their Title V CSHCN program. Please send replies to the following questions by October 23, 2009, to Linda Goetze, 800-887-1699:

  • In what state do you live?
  • If your state CSHCN program provides care coordination, how well is it meeting the needs of families?
  • In general, what do families view as important components of good care coordination?

Catalyst Center

Building on the reports described in the August issue of Friday's Child, this latest brief, "The Essential Components of Health Care Reform for Children with Special Health Care Needs" identifies specific aspects of health care reform that relate to children with special health care needs.

Genetic Alliance

The Genetic Alliance is currently seeking nominations for three awards to honor healthcare professionals ("Art of Listening" award), journalists ("Art of Reporting" award), and companies ("Art of Industry Partnership" award) deserving recognition for work done to increase public understanding of genetics and specific diseases. These awards will be presented on July 16-18, 2010 at the Genetic Alliance Annual Conference in Washington, DC.


"The beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image. Otherwise we love only the reflection of ourselves we find in them."
-- Robert Merton

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