Community awareness is one response to a public health problem that can be effective in stimulating further action. Awareness is often only the first step; but as members of important service systems and the public increasingly understand there is a problem—and learns that something can be done about it—the momentum for building the continuum of care will grow.
Community awareness of FASD has grown dramatically over the past 30 years. There are now many Web sites, books, newsletters and articles offering accurate and useful information about FASD. (At the same time, note there is still a lot of misinformation on the Web about FASD and FASD intervention!) In the U.S., for example, public health literature (and training) is available from governmental bodies such as the Centers for Disease Control and Prevention (CDC), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), and the Substance Abuse and Mental Health Services Administration (SAMHSA). Literature and training are also available from national organizations such as the ARC, March of Dimes or NOFAS; academic institutions; and state-level organizations of parents advocating for FASD. Public health-oriented literature and training are also available from organizations focusing on developmental disabilities, health conditions, or even specifically on FASD. Other countries also offer public health literature. There are also listservs connecting families and professionals together, such as FASLink.
In the U.S., the SAMHSA FASD Center for Excellence has sponsored organized efforts to build state systems to improve policies, existing service delivery systems and surveillance to create sustainable evidence-based responses to FASD.
But community awareness is only the first step. Of great importance is specialized training for adoptive and foster parents and for family advocates. Equally important is targeted pre-service education and continuing education training for paraprofessionals and professionals in a wide range of disciplines: health care, mental health, education, juvenile justice/correctional, legal, early intervention, adoption and child welfare, chemical dependency, vocational training and more. Of particular importance is training for key personnel who can prevent FASD (or identify it very early), such as those who provide prenatal care, neonatal care, chemical dependency treatment, and family planning services. Also essential is training for professions who may not yet be targeted for training, or who may not have an easily accessed, systematic method for monitoring training. This includes the wide range of daycare and early intervention providers, who have an excellent opportunity for early identification and even FASD prevention.
Curricula have been developed for parents and for many disciplines (especially physicians and teachers). A variety of FASD curricula for parents and professionals can be found through an Internet search. Curricula exist for juvenile justice and chemical dependency personnel. There are now four regional training centers established and funded by CDC to develop, implement and evaluate training curricula for medical and allied health care professionals, including evidence-based guidelines for FASD. There are also four organizations developing curricula for parents, school staff, Native American communities and other adult learners, funded by the CDC.
But it is still essential for these curricula to actually be adopted (and mandated for use)—or appropriate specialized curricula to be developed— by training institutions, certification groups and professional organizations.
The Iceberg newsletter is one useful way to do this!! And here are a few more ideas:
• Continue operation of regional FASD training centers.
• Encourage training on new developments in FASD in conferences for professional
organizations, or through the efforts of those who are building state systems
to respond to FASD.
• Mount campaigns to encourage formal adoption of existing curricula in
professional training, such as in medical schools, early intervention systems,
and in training for juvenile justice workers.
• SAMHSA FASD Center for Excellence. The center has created an amazingly comprehensive list of “promising practices” and informational resources that families and professionals can access.
• NOFAS. This is a national FASD advocacy organization, offering informational resources and links with state affiliates.
• FASLink. This a listserv that connects individuals interested in FASD; it is based in Canada but serves an international audience.
Screening systems that find and identify children at risk
Passive screening systems, such as birth defect registries, can find some infants
with problems. But these passive systems are less useful for prenatal alcohol
damage. FASD comprise a spectrum of neurodevelopmental disabilities that are
revealed not only in physical findings (facial features and growth impairment)—
but also in complex learning and behavior problems, and difficulty in adaptive
function (Astley, 2004; Riley & McGee, 2005; Streissguth, 1997). These problems
result from dysfunction of the brain and central nervous system that becomes
increasingly obvious as children grow older. Screening systems for FASD are
likely most effective when they use a more active approach, and when they can
screen children across a wider age range.
As FASD diagnostic clinics develop, communities build up their own outreach
and identification systems. In a sense, these are still passive screening systems,
since screening for FASD takes place on a case-by-case basis. Families learn
about the clinics and seek services. Professionals become aware of the clinics
through trainings or word of mouth, and refer for diagnosis. This kind of diagnostic
clinic-oriented screening system can be most effective, widespread and active
with greater community awareness and more extensive professional education.
Screening systems for identification of children impacted by prenatal alcohol exposure that are truly active have been developed and can potentially be incorporated into standard, ongoing care—and will likely be effective. Maternal self-report is still the best source of evidence of risk from prenatal alcohol exposure, so asking women in prenatal and delivery settings in a manner protected from serious consequences is potentially very useful for screening (Ondersma, 2006). There is also considerable research on screening through biomarkers such as meconium or other toxicology assays (e.g., Littner & Bearer, in press), although these aren’t yet fully realized. There are even suggestions that screening can be carried out in very early infancy, using cranial ultrasounds (Bookstein et al., 2005). Universal screening is the ideal, but targeted screening in groups at high risk for FASD can also be very helpful. A facial photographic screening system using digitized photographs, successfully used in Washington state in the foster care system, is an active screening system for FAS among a group of children at very high risk for prenatal substance exposure, including alcohol (Astley, 2002). Active screening for FASD using various methods has also been successfully carried out in elementary schools, on a small scale in the U.S. and more recently on a somewhat larger scale in Europe and South Africa (Clarren et al., 2001; May et al., 2000; May et al., 2006).