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NOFAS has a full slate of FASD education and advocacy action items planned for 2010, the organization’s 20th Anniversary. Priorities include the expansion of essential existing programs and the implementation of important new initiatives to increase FASD prevention and services, and to grow the visibility of the NOFAS brand. Success depends on securing new corporate and foundation funding and the generosity of individual contributions. NOFAS needs your support today to educate the public, professionals and policymakers about the risk of alcohol during pregnancy, help pregnant women stop drinking alcohol and increase access to services for children and adults with FASD.
Founded in 1990, NOFAS has reached many significant milestones during the past 20 years. However, there is much work to be done to fulfill the promise of eliminating the leading known preventable cause of intellectual disabilities and birth defects. The NOFAS priorities for 2010 begin with maintaining and expanding critical ongoing NOFAS programs:
The Alcohol and Pregnancy and FASD Information and Referral Clearinghouse
Serving the public and FASD families since 1990, last year the clearinghouse responded to an average of 200 specific requests for information, resources and materials each week, apart from the millions of NOFAS website visitors. The clearinghouse includes the FASD national and state resource directory and comprehensive information on the many facets of alcohol and pregnancy and FASD for diverse audiences.
Public Education
Universal prevention to the public at-large and selective prevention targeting at-risk subgroups have been a NOFAS priority for 20 years. In 2010, NOFAS will disseminate a range of prevention strategies and materials nationally, in select communities and among specific audiences that will include television, radio and internet public service announcements, posters and brochures and a broad range of multimedia displays.
Curriculum, Training Seminars and Certification
Education for medical and allied health practitioners and students remains a top priority for NOFAS. Any professional that treats or gives counsel to patients must be educated about FASD so that they may appropriately care for and refer individuals with the disorder. This includes workers in all systems of care from medicine to mental health to education to the juvenile and criminal justice systems. NOFAS directs a medical school curriculum at select universities and presents countless workshops and seminars throughout the year. Online and in-service Continuing Medical Education and FASD certification sponsored by NOFAS provides an important incentive for practitioners to focus on FASD.
Community Health Center (CHC) Alcohol and FASD Screening, Intervention and Referral
In 2005, NOFAS launched this initiative at select Community Health Center sites to screen both pregnant and non-pregnant women for alcohol use disorders and to screen children for Fetal Alcohol Spectrum Disorders (FASD). Since the project began NOFAS has worked in 8 states with 12 CHCs encompassing 35 clinical sites. Hundreds of clinical professionals have been trained and thousands of women have been screened.
Circle of Hope and Family Support Group
The Circle of Hope is a network of women who have consumed alcohol during pregnancy and may have a child or children with Fetal Alcohol Spectrum Disorders (FASD). The women support one another in recovery and/or through the challenges of parenting a child with FASD. They serve as mentors to women newly in recovery, and collectively seek to overcome the stigmatization of alcoholism, addiction and FASD. The Circle was founded in 2002 and has over 200 members. NOFAS has also sponsored a Washington, D.C. Metropolitan Area FASD family support group since 1998.
Affiliate Network
The network now consists of 21 affiliated, autonomous organizations addressing FASD. Collectively, the network establishes common goals and messages, seeks consensus on issues within the FASD arena, encourages collaboration on public health and advocacy programs and services, and seeks to leverage resources. 2010 goals will include federal and state legislative advocacy and the replication of established programs.
Consumer and Policy Advocacy
Through the Clearinghouse NOFAS provides vital consumer advocacy directly to individuals with FASD and their family members and caregivers. NOFAS helps families navigate systems of care and link to benefits and services. Policy advocacy focuses on all levels of government including authorizing legislation, eligibility standards, public health advisories and non-governmental issues such as service reimbursement and FASD recognition.
Media Outreach
NOFAS responds to both accurate and inaccurate portrayals of FASD and the risk of alcohol during pregnancy in all media. NOFAS also prepares press releases and pitches news, feature and editorial coverage on NOFAS and FASD.
NOFAS also plans to develop and implement an important new initiative in 2010:
FASD Prevention and Research Initiative
NOFAS is seeking both public and private funding to adapt its successful Community Health Center screening project for implementation in a range of Southern California-based health care delivery networks such as the Indian Health Service (IHS) and tribal direct health care service delivery facilities, the Veterans Affairs (VA) integrated health care system, and Women, Infants, and Children (WIC) clinic sites.
As part of the new project, NOFAS plans to continue its partnership with ScienceMedia to complete web-based FASD training modules for professionals and to explore the use of computer assisted screening technology such as eCHECKUP TO GO. ScienceMedia develops interactive, electronic, science-based education utilizing state of the art media and web-based technologies. The FASD curriculum nearing completion consists of a two-module course with FASD education, risk assessment, intervention techniques and prevention with a run-time of 50 minutes. It includes video-examples within an animated instructional design framework.
The eCHECKUP TO GO program was developed by the San Diego State University Research Foundation as an alcohol assessment tool that provides the user with important information about alcohol and health. It has been adapted for a pilot project to test the feasibility of web-based screening for alcohol use among pregnant women in a WIC clinic in California. The project has demonstrated that web-based assessment, as represented by WIC clients, is both feasible and reliable. Accredited web-based training and the use of electronic screening technology will significantly enhance project expansion and ensure uniform application across clinical settings.
As with all NOFAS programs, the screening and intervention initiative will be designed within existing clinical framework and implemented under the conditions determined by the participating clinics. The expanded project consists of:
- Formative research within a given clinical network consisting of an environmental scan of existing screening and data collection methods;
- Development of culturally appropriate FASD prevention messages and materials;
- Objectives and outcomes;
- Project timeline;
- Implementation and assessment of both in-service and web-based training;
- Implementation and assessment of select screening and brief intervention models such as Screening, Brief Intervention, Referral, and Treatment (SBIRT) and Project Choices;
- Implementation and assessment of select screening instruments such as the AUDIT-C, TWEAK, TACE, CAGE and 4 Ps;
- Implementation and assessment of both practitioner administered and computer assisted screening formats such as eCHECKUP TO GO;
- Technical assistance;
- Incentives for participation and achievement of performance measures;
- Monitoring;
- Data collection and evaluation;
- Publication of findings;
- Reporting.
The California-based energy company Edison International has provided funding to put into practice select facets of the project at the Soboba Health Care Center in Southern California, and will be used to leverage additional resources. The Soboba expansion is currently in development and will be carried out in partnership with the Soboba Band of Luiseno Indians, Riverside/San Bernardino County Indian Health, and the California Area Indian Health Service.
NOFAS is proud of its achievements during its first 20 years. However we are not at all satisfied, and as we enter the new decade we are deeply concerned about the recent findings that as many as 5% of school children in America--and a far greater proportion in other developed countries--have learning and or behavioral problems due to prenatal alcohol exposure. Based on the prevlance and significance of the issue, and the costs to society, it's time now to finally address FASD with the attention and investment it deserves, and striving toward that end is the overarching purpose for NOFAS in 2010.
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