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Today, FASD is appropriately viewed as an emerging public health issue, one that may grow with improved diagnosis and surveillance. Recognizing that, Congress established the FASD Center for Excellence in 2001 as part of a federal effort to address FASD. The center is operated by the Substance Abuse and Mental Health Services Administration, which is part of the US Department of Health and Human Services. The center's mandates include studying interventions and strategies for people who have an FASD, identifying communities with exemplary systems of care for FASD, providing technical assistance and Warning to improve services, and developing techniques for FASD prevention. To help achieve its mandates, the center has sought input from FASD constituency groups through its Steering Committee and a series of town hail meetings.
In 2002 and 2003, the FASD Center for Excellence convened 15 town halt meetings with individuals who have an FASD, their families and caregivers, service providers, researchers, policymakers, and community leaders. The purposes of the meetings were to identify needs and sham information about services that prevent and treat FASD. The meetings also were intended to raise awareness, facilitate coordination among service systems, and increase sup port for services at the state level. To organize the town hall meetings, the center worked with the FASD Family Resource Institute, the Alaska Office of FASD, and the National Organization on Fetal Alcohol Spectrum Disorder. These advocacy organizations were well positioned to recruit participants through established networks of concerned families, professionals, and organizations, and through traditional social marketing efforts.
More than 800 people participated across the nation, with more than 500 providing testimony in Alaska, Arizona, California, Colorado, the District of Columbia, Florida, Illinois, Maryland, Michigan, Minnesota, Mississippi, New York South Dakota, Texas, and Washington, Most of the testimony came from foster and adoptive parents of children who have an FASD and service system professionals (Table 1), Their perspectives may have differed from those of groups less represented at the meetings, such as birth parents, persons who have an FASD, and medical professionals. Efforts are under way by the FASD Center for Excellence and others, such as the Centers for Disease Control and Prevention (CDC), to cast a wide net for examining the issue of FASD from all sides. However, the center is confident in the overall validity of the town hall findings. For example, testimony about barriers to obtaining a diagnosis coincides with the known scarcity of professionals who am qualified to make a diagnosis.
Testimony at the town hall meetings focused overwhelmingly on the need for services that treat and prevent FASD. The gaps cut across multiple systems and areas, including health care, education, mental health care, substance abuse treatment, developmental disabilities services, social services, housing, income support, vocational rehabilitation, criminal justice, prevention systems, and adoption laws (Table 2). The issues described in the testimony were consistent geographically, with no notable regional differences. The findings echoed the results of an environmental scan that the center conducted to identify FASD prevention and intervention programs, which revealed a severe shortage of services nationwide.
Each town hall meeting participant who wished to testify was given approximately 5 minutes to provide oral testimony, which was recorded on audiotape and in some cases, videotape. Those who did not wish to testify onsite were invited to submit written testimony.
On the basis of meeting transcripts, tapes, and written testimony, reviewers noted the general tone of the meeting, the problems and needs that were discussed, and the suggestions and recommendations that were made. Reviewers developed codes for topical categories and subcategories, and they entered a summary of each piece of testimony into a database. To determine how many times an issue was mentioned, reviewers searched the testimony text for key words. Reviewers also used the database to determine the number of persons who testified from particular groups (e.g., parents, professionals).
Understanding the Problem
The town hall meetings revealed a general lack of appropriate FASD-related services. Within the health care system, FASD is often misdiagnosed or inappropriately treated, Obtaining a diagnosis is extremely difficult because, of inconsistent diagnose criteria and terminology combined with a shortage of professionals who are qualified to make a diagnosis. Insufficient knowledge and training about FASD, particularly among pediatricians, social workers, psychologists, and psychiatrists, results in failure to provide necessary services or to make appropriate referrals.
Finally, the testimony reflected great frustration with the school system, particularly special education, largely became of lack of awareness and understanding about FASD, Many people spoke of their struggles to educate teachers and school administrators about FASD and the negative impact on children of inappropriate educational interventions. Some parents had resorted to quitting their jobs and home-schooling their children, which further isolated their children and created a financial burden. Numerous testifiers portrayed a wrenching educational experience that was fraught with failure.
Effective Prevention Strategies
Many physicians continue to counsel their pregnant patients that it is acceptable to have an occasional drink, yet there is no known safe level of alcohol use during pregnancy. Additionally, some women take such vague advice as a medical green light to drink, leading them down a slippery slope toward heavier drinking. Physicians also fail to screen women who may be at risk and refer them to appropriate services. Their reasons include fear of stigmatizing patients or incurring litigation; lack of screening tools, time, and services; and personal discomfort discussing the issue with patients. Many physicians also have a poor understanding of FASD.
Pregnant women and women of childbearing age who are in treatment for substance abuse are at high risk for an alcohol-exposed pregnancy, but many may be in the dark about FASD. During a special town hall meeting for women in recovery, women testified that while in treatment, they had not been told about the dangers of drinking during pregnancy.
The Institute of Medicine classifies prevention programs as universal, selective, or indicated, For FASD, universal prevention includes educating the general public with tools such as alcohol warning labels. Selective prevention efforts target pregnant women or women of childbearing age, often through screening and intervention. Indicated prevention efforts address women at highest risk--such as women who have substance abuse problems or those who have given birth to a child who has an FASD--primarily through treatment. Research shows that selective and indicated prevention strategies can be effective in preventing FASD. Universal strategies help raise awareness but have not been shown to change behavior and prevent FASD.
The FASD Center for Excellence has identified and analyzed 639 prevention and intervention programs associated with FASD in the United States and Canada. Few of the programs specifically address FASD, and prevention programs are particularly scarce. It is difficult to discern best practices among the programs, because few have been evaluated to determine their effectiveness. No comprehensive systems of care for the prevention or treatment of FASD have been identified.
The National Registry of Effective Programs, which evaluates promising and best practices for substance abuse prevention and treatment, has approved 2 programs that help reduce rates of FASD. The Nurse--Family Partnership Program in Denver, Colorado, provides home visits by registered nurses to expectant and new mothers and is considered a model program. Although it does not specifically target FASD, the program has been shown to reduce substance use and improve birth outcomes. The Parent-Child Assistance Program in Seattle, Washington, has been recognized as a promising program. It also involves home visits to expectant mothers and has been shown to reduce alcohol use and improve birth outcomes.
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