U.S. House of Representatives Staff Briefing on Fetal Alcohol Spectrum Disorders
February 25, 2004
Report on House Briefing
On Wednesday, February 25, 2004, the National Organization of Fetal Alcohol Syndrome (NOFAS), along with the Congressional Prevention Coalition, the Bipartisan Disabilities Caucus, Congressional Caucus on Women's Issues and the Congressional Native American Caucus hosted its first briefing for House staffers on the impact fetal alcohol spectrum disorder (FASD) 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 alcohol spectrum disorder 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.
Alcohol and Human Development
In his presentation, Dr. Luther Robinson, associate professor of pediatrics at State University of New York at Buffalo, described the effects of prenatal alcohol exposure on human development.
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?
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.
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. Debbie Cohen, the director of the New Jersey Office for Prevention of Mental Retardation and Developmental Disabilities discussed the impact of FASD on various systems. She mentioned that the costs of FASD to the system are "absolutely enormous." It was suggested that we are only able to estimate what is the tip of the iceberg with regard to the costs of FASD because so few of the kids who have been exposed are diagnosed. The lifetime costs of FASD can include special education, extraordinary health care, Medicaid costs, unemployment, interaction with the juvenile and criminal justice systems and involvement in the child welfare system.
Dr. Cohen recommended three criteria that will help a child who has been exposed to alcohol parentally to succeed. First, the child needs to be diagnosed at an early age. Second, the child will benefit substantially from being raised in a loving family. Third, appropriate services need to be made available to meet the unique needs of the individual. Families are the most basic social service provider available. By providing parents with the proper training, the high costs to the system can be reduced.
Remarks by Congressman Langevin
Congressman James Langevin, co-chair of the Bipartisan Disabilities Caucus, also shared remarks at the briefing. He stated, "While the issue we have gathered to discuss is a challenging one, I am motivated by the fact that Fetal Alcohol Spectrum Disorder is 100% preventable."
The congressman discussed FASD as a large problem that only can be addressed by working together, with all members of the community involved in the effort. He stated, "Young adults must know that if they are pregnant and they drink alcohol, so does their baby. They must know the severe consequences—birth defects, learning disabilities and severe mental retardation. They must know where to turn to seek help in overcoming addiction. Furthermore, parents, health care providers, social workers, educators and members of the criminal justice system must be educated about the prevalence of this disease. The far-reaching effect this epidemic has on our communities is too-often underestimated."
Congressman Langevin closed by pledging to continue his work in helping society recognize and accept the challenges facing those affected by disabilities and to continue to strongly support policies that lead to early diagnosis and assessment.
Interagency Efforts
Ann Acosta, the project director at the Substance Abuse and Mental Health Services Administration (SAMHSA), discussed the national response to the disorder, with special attention to the collaborative prevention and treatment efforts of the federal administration.
In 1996, the Institute of Medicine issued a report on alcohol and drinking, and the primary need identified was greater coordination among federal agencies. Shortly thereafter the Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS) was established under the auspices of the National Institute of Alcohol Abuse and Alcoholism (NIAAA). ICCFAS serves as a forum for information sharing at the federal level.
Priority areas for the ICCFAS include:
- 1 Information dissemination
- 2 Prevention of drinking during pregnancy
- 3 Intervening with affected families
- 4 Improving methods for diagnosis and case identification
- 5 Increasing research on etiology and pathogenesis
A national task force convened in 2000. The task force is a congressionally mandated effort that serves to make recommendations to other federal agencies and academic bodies. It convenes approximately twice a year and is chartered under the Centers for Disease Control and Prevention.
A second congressionally mandated effort was established at the end of 2001 under SAMHSA. The FASD Center for Excellence has the following mandates:
- To identify communities with comprehensive systems of care
- To develop preventive interventions for women
- To provide technical assistance to communities
- To provide training to states and communities
- To carry out recommendations of the national task force
Critical issues for the federal agencies include:
- Continuation of the Interagency Coordinating Committee on FASD
- Research on the differential diagnosis of FASD
- Development of behavioral interventions and pharmacotherapies for specific deficits
- Increase awareness of health care, education and justice professionals
- Increased coordination within state systems
For more information about FASD, contact NOFAS at (202) 785-4585 or at www.nofas.org.
|
