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9
Integration and Coordination:
A Concluding Comment and
Recommendation

There is no single, organized discipline within medicine that can, at this time, logically be held responsible or accountable for the development of a comprehensive approach to preventing and treating fetal alcohol syndrome (FAS), alcohol-related neurodevelopmental disorder (ARND), or alcohol-related birth defects (ARBD). Nor is there a single discipline in the broader arena of health and health care appropriate for this role. The problem is obvious. Primary care health care providers are frequently presented with the opportunity to detect substance abuse and make referrals for treatment. Psychiatrists and other mental health care workers also are responsible for recognizing and treating substance abuse and dependence. Obstetricians and family physicians are concerned principally with the prevention and management of teratogenic exposure, while pediatricians and family physicians manage birth defects in infants. Because the disorders pose health and developmental problems over the life span, they have been variably managed after the newborn period by pediatric subspecialists such as clinical geneticists, developmentalists, child neurologists, and others. No group has yet shown any interest in the management of FAS, ARBD, or ARND patients as adults. Families affected by FAS frequently require the services of specialists in substance abuse, developmental disabilities, and education. Therefore, these disorders lie within the purview of many groups but are clearly not the full responsibility of any one. All groups will accept, or have accepted, an interest in handling an appropriate piece of the problem, but no one is in a position to lead and coordinate. Hence, there is no group to which government can look for leadership, and no group is focused on advocacy or comprehensive



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Page 194 9 Integration and Coordination: A Concluding Comment and Recommendation There is no single, organized discipline within medicine that can, at this time, logically be held responsible or accountable for the development of a comprehensive approach to preventing and treating fetal alcohol syndrome (FAS), alcohol-related neurodevelopmental disorder (ARND), or alcohol-related birth defects (ARBD). Nor is there a single discipline in the broader arena of health and health care appropriate for this role. The problem is obvious. Primary care health care providers are frequently presented with the opportunity to detect substance abuse and make referrals for treatment. Psychiatrists and other mental health care workers also are responsible for recognizing and treating substance abuse and dependence. Obstetricians and family physicians are concerned principally with the prevention and management of teratogenic exposure, while pediatricians and family physicians manage birth defects in infants. Because the disorders pose health and developmental problems over the life span, they have been variably managed after the newborn period by pediatric subspecialists such as clinical geneticists, developmentalists, child neurologists, and others. No group has yet shown any interest in the management of FAS, ARBD, or ARND patients as adults. Families affected by FAS frequently require the services of specialists in substance abuse, developmental disabilities, and education. Therefore, these disorders lie within the purview of many groups but are clearly not the full responsibility of any one. All groups will accept, or have accepted, an interest in handling an appropriate piece of the problem, but no one is in a position to lead and coordinate. Hence, there is no group to which government can look for leadership, and no group is focused on advocacy or comprehensive

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Page 195 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.

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Page 196 • Therefore, the committee recommends that an interagency task force, or other entity comprised of representatives from the relevant federal research, surveillance, and services agencies, be established to coordinate national efforts in FAS, ARND, and ARBD. Lead responsibility for heading this task force should be assigned to NIAAA, because it is experienced at encouraging research and at incorporating research methodologies into all activities and has had the longest history in addressing FAS. However, all member agencies should be willing and able to translate research findings into service delivery and policy development activities and be expected to contribute to and be consulted with about achieving the overall goals of preventing FAS. It is suggested that one of the top priorities of such a coordinating body should be to forge interagency cooperation in the adoption of a common terminology and set of definitions related to these disorders, such as proposed in this report, and the design and implementation of national surveys to estimate the true prevalence of FAS, ARND, and ARBD. At the same time, prevention and treatment of secondary disabilities associated with FAS, ARND, and ARBD, as well as prevention and treatment of alcohol abuse and dependence by pregnant women and by women at risk of becoming pregnant, should be a high, and long-term, priority of this coordinating body. Additional important areas of focus should include basic research and communication among the basic and clinical research communities and the health services community. Recommendations for research in all aspects of FAS can be found in this report and should serve as guidance for the coordinating body. Finally, the coordinating body should take active steps to encourage and facilitate the rigorous evaluation of all intervention programs.