U.S. Senate Staff Briefing on Fetal Alcohol Spectrum Disorders
February 9, 2004
Report on Senate Briefing
On Monday, February 9, 2004, the National Organization of Fetal Alcohol Syndrome (NOFAS), along with the Congressional Prevention Coalition, the Congressional Coalition on Adoption and the Office of Senator Chris Dodd, hosted its first briefing for Senate staffers on the impact fetal alcohol spectrum disorder (FASD) has had on our health care, educational and judicial systems.
Fetal alcohol syndrome (FAS) is the leading cause of mental retardation in the United States and can cause facial deformities, growth deficiency and permanent learning disabilities. The term fetal slcohol spectrum disorder (FASD) reflects the continuum of effects that can result from prenatal exposure to alcohol. FASD affects more newborns every year than Down syndrome, cystic fibrosis, spina bifida and sudden infant death syndrome combined. The latest studies estimate that 40,000 infants are born in the U.S. each year with FASD. That means there is a new case for one out of every 100 births.
In his presentation, Dr. Ed Riley, chairman of the National Task Force on Fetal Alcohol Syndrome, talked about the difficulty in diagnosing FAS and FASD. While specific facial features can occur as a result of alcohol exposure during pregnancy, significant neurobehavioral deficits can result from exposure at any time. This means that while as many as 8,800 cases of FAS occur each year, four times as many individuals can be affected by FASD. Studies have shown children with and without physical features of FASD display similar deficits. The behavioral profile of individuals with both FAS and FASD can include reduced IQ, learning disabilities, hyperactivity, attention deficits, poor motor skills and hearing abnormalities. With almost 2.9 million school-aged children classified as having specific learning disabilities in the U.S., we are left wondering how many are related to prenatal alcohol exposure?
Costs to the System
An individual with FAS can carry a lifetime health cost of $860,000. In 2003, FAS costed the U.S. $5.4 billion in direct and indirect costs. The total cost for FASD is expected to be much higher and the social implications are far reaching. Susan Carlson, former First Lady of Minnesota and Hennepin County Juvenile District Court referee shared her experience of dealing with substance abuse issues and adolescents in the justice system. She found that among the adolescents she saw on the detention calendar, 57 percent had lower than average IQ and 75 percent had family histories of substance abuse, domestic violence, child abuse, criminal behavior and mental disabilities. It still is unclear how many individuals with FAS and FASD are in the justice system, but many experts believe that FAS may be the single largest factor that establishes physical and neurobiological conditions that predispose individuals to aggressive and violent behavior.
Recognizing the link between child maltreatment and subsequent criminal behavior, we can see how affected individuals are at greater risk since children prenatally exposed to alcohol have been found to be two to three times more likely to be abused than non-exposed children. Individuals with the disorder also are more susceptible to peer pressure, often act on impulse, and do not learn from their mistakes. These characteristics increase their chances of breaking the law at some point of their lives.
Long-term Outlook of Living With FASD
The long-term outlook of caring for individuals with FASD often is filled with frustrations and systems that are ill-prepared to offer appropriate support or services. Kathy Mitchell, vice president and national spokesperson for NOFAS, talked at the briefing about her experience raising a daughter with FASD. While her daughter, Karli, is 31 years old, she still is unable to tell time or cross the street by herself. Karli was misdiagnosed for the first 16 years of her life with a variety of afflictions, including cerebral palsy and willful misbehavior. FASD often is confused with other disorders, such as conduct disorder, attachment-bonding disorder, borderline personality disorder and autism. Ms. Mitchell stresses that early and accurate diagnosis is key to receiving appropriate educational and medical support, as well as breaking the cycle within the family. It also is important to train physicians and allied health professionals to recognize and treat women with addictive disorders in order to prevent future cases of FASD.
Interagency Efforts
Dr. Faye Calhoun, deputy director of the National Institute on Alcohol Abuse and Alcoholism (NIAAA) presented information on the Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS), which carries out initiatives in research, special education, prevention, human development, alcohol treatment, health care services and juvenile justice. The committee plans on increasing their efforts in information dissemination, diagnosis and case identification, interventions with families affected by substance abuse and research on FAS etiology. The current membership of the ICCFAS includes:
- U.S. Department of Education
- Agency for Health Care Research and Quality
- Centers for Disease Control and Prevention
- Health Resources and Services Administration
- Indian Health Service
- National Institute on Alcohol Abuse and Alcoholism
- National Institute of Child Health and Human Development
- National Institute of Nursing Research
- Substance Abuse and Mental Health Services Administration
- U.S. Department of Justice
Overall, the panel provided a picture of how FASD impacts society today. As Senator Chris Dodd states, "Far too many children live with the disabilities associated with fetal alcohol syndrome—disabilities that could have been prevented had information and addiction treatment been available to their mothers. We must do all we can for parents, children and the medical community to better understand the causes, treatments, and prevention measures that will help prevent any more children from suffering from this disease." For more information about FASD, contact NOFAS at (202) 785-4585 or at www.nofas.org.
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