The Toolkit

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The Toolkit

 

This comprehensive toolkit serves as the framework for the medical home management of a child with an FASD providing tools and resources for primary care providers to be better equipped to meet the special needs of these children and families. Fetal alcohol spectrum disorders (FASDs) is a term that encompasses the range of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning problems. Often a person with an FASD has a combination of these problems. We do not know exactly how many people have an FASD. Centers for Disease Control and Prevention (CDC) studies have shown that 0.2 to 1.5 cases of fetal alcohol syndrome (FAS) occur for every 1,000 live births in certain areas of the United States.1–4 Other studies looking at older children have much higher estimates of FAS. Several initial studies, using very active case findings of school-aged children, indicate that perhaps up to 2% to 5% of children in the United States have FASDs. 

About the AAP FASD Toolkit

The American Academy of Pediatrics (AAP) FASD Toolkit was developed to raise awareness, promote surveillance and screening, and ensure that all children who possibly have FASDs receive appropriate and timely interventions.

This comprehensive toolkit serves as the framework for the medical home management of a child with an FASD in the medical home. A multidisciplinary team approach is the best way to care for a child with an FASD, and it will generally take multiple visits to address the many facets of these conditions. Because this is a spectrum of disorders, not every child will have the same management plan. Medical home providers will need to customize the management plan based on the specific needs of each child. Additionally, resources available in one community will differ from another, so the care plan will differ accordingly.

Acknowledgements

This toolkit was developed under the auspices of a 5-year cooperative agreement with the CDC's National Center for Birth Defects and Developmental Disabilities.

The AAP would like to thank the FASD Expert Panel members who devoted their time and expertise in the development of this toolkit and continue to provide support for the projects within this cooperative agreement.

  • Phillip John Matthias, MD, FAAP
  • Paul Seale, MD
  • Yasmin Suzanne Nable Senturias, MD, FAAP
  • Vincent C. Smith, MD, FAAP
  • Renee M. Turchi, MD, MPH, FAAP
  • David Wargowski, MD 
  • Janet F. Williams, MD, FAAP
Liaisons

Jeanne Mahoney
Providers Partnership Project
American College of Obstetricians and Gynecologists

Jacquelyn Bertrand, PhD
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Elizabeth Parra Dang, MPH
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

American Academy of Pediatrics Staff
Rachel Daskalov, MHA
Faiza Khan, MPH

Cooperative Agreement

FASDs is one topic area addressed as part of the Program to Enhance the Health and Development of Infants & Children (PEHDIC) cooperative agreement between the American Academy of Pediatrics (AAP) and the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC). For more information on FASDs or this program, contact Faiza Khan, MPH, Program Manager, AAP Division of Children with Special Needs at 847/434‐4924.

CDC FASD Regional Training Centers

The CDC funds FASD Regional Training Centers (RTCs). The purpose of these Centers is to develop, implement, and evaluate educational curricula regarding FASD prevention, identification, and care; and to incorporate the curricula into the medical and allied health training programs at each grantee’s university or college, into other schools throughout their regions, and into the credentialing requirements of professional boards.

Arctic FASD Regional Training Center
Diane King, PhD
University of Alaska Anchorage
Phone: 907‐786‐1638
Web: www.uaa.alaska.edu/arcticfasdrtc

Frontier FASD Regional Training Center
Nancy Roget, MS
University of Nevada, Reno
Technologies (CASAT)
Phone: 775‐784‐6265
Web: http://www.frfasd.org

Great Lakes FASD Regional Training Center
Georgiana Wilton, PhD
University of Wisconsin School of Medicine
Phone: 608‐261‐1419
Web: www.fasdeducation.org

Midwestern FASD Regional Training Center
Leigh Tenkku, PhD, MPH
University of Missouri
Phone: 573-884-5459
Web: www.ssw.missouri.edu/MRFASTC

Southeastern FASD Regional Training Center
Roger Zoorob, MD, MPH, FAAFP
Meharry Medical College
Phone: 615‐327‐6572
Web: www.fasdsoutheast.org

Web Resources

National Organization on Fetal Alcohol Syndrome: www.nofas.org
Centers for Disease Control and Prevention: www.cdc.gov/fasd
National Institute on Alcohol Abuse and Alcoholism: www.niaaa.nih.gov
Substance Abuse and Mental Health Services Administration, FASD Center for Excellence:
www.fasdcenter.samhsa.gov

References

  1. Centers for Disease Control and Prevention. Fetal alcohol syndrome—United States, 1979–1992. MMWR Morb Mortal Wkly Rep. 1993;42(17):339-341
  2. Centers for Disease Control and Prevention. Update: trends in fetal alcohol syndrome—United States, 1979–1993. MMWR Morb Mortal Wkly Rep. 1995;44(13):249-251
  3. Centers for Disease Control and Prevention. Surveillance for fetal alcohol syndrome using multiple sources—Atlanta, Georgia, 1981–1989. MMWR Morb Mortal Wkly Rep. 1997;46(47):1118-1120
  4. Centers for Disease Control and Prevention. Fetal alcohol syndrome—Alaska, Arizona, Colorado, and New York, 1995–1997. MMWR Morb Mortal Wkly Rep. 2002;51(20):433-435
  5. May PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M, Hoyme HE. Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Reviews 2009;15:176-192
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