education about the disorders. Attention to FAS, ARBD, and ARND, then, is structurally marginalized, and like any problem that falls between organized disciplines, progress is unavoidably hampered. Both FAS research and service delivery suffers.
Such structural marginalization is also evident in government, where it is difficult to find a government system that is positioned to address these disorders in a comprehensive manner. The National Institute on Alcohol Abuse and Alcoholism (NIAAA) has lead responsibility for research on alcohol and historically has played the major role in FAS research. The Centers for Disease Control and Prevention recently has expanded its FAS activities beyond surveillance into prevention. The Substance Abuse and Mental Health Services Agency (SAMHSA) funds prevention and treatment demonstration projects for substance-abusing pregnant women, including women at risk for having a child with FAS. The Health Services and Resources Administration co-funds some of the SAMHSA programs and sponsors maternal and child health projects. The Indian Health Service provides services to some populations at risk for FAS and other alcohol-related problems. No agency has assumed responsibility for research on interventions with people affected by FAS, ARBD, or ARND. No agency has responsibility for coordinating the many services needed by families affected by FAS and related disorders.
It is often difficult to achieve meaningful cooperation among government research and services agencies for a given problem. Such cooperation, however, can be facilitated by willingness of individual personnel to move beyond the structural barriers of government bureaucracies. In most state governments, agencies responsible for child neglect and abuse, foster and adoptive care, health, education, criminal justice, and alcohol treatment are distinct entities. Yet, interagency coordination of personnel and budgets is needed for state governments to help patients and their families affected by FAS, ARND, or ARBD, without involving the criminal justice and social service systems that are focused on child abuse. At the federal level, there is similarly no single agency responsible for all the programs or research needed.
It is clear that neither governmental structures nor the organization of modern medicine and health care can be redesigned. Thus, the challenge is to improve communication and cooperation among health, education, and social services disciplines and government agencies. The committee believes that such cooperation may best be addressed by the recommendations made to increase professional education about FAS and its related disorders, and to establish clinical practice guidelines for the management of patients and their families (see Chapters 7 and 8). Further, the committee believes that any possible coordination at a state level will depend first on leadership shown by federal agencies to communicate with each other and to coordinate programmatic goals and objectives.