Today is International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day! We celebrate this awareness day every September 9 (the ninth day of the ninth month), symbolizing the nine months of pregnancy, during which a woman can prevent FASDs by not drinking alcohol. FASD is an umbrella term describing the range of effects that can affect a person whose mother drank alcohol while pregnant. FASDs are the most common condition associated with intellectual and developmental disabilities (I/DD) that are 100% preventable.
The Arc is very active in both preventing FASDs from occurring and in serving people who have FASDs.
The Arc’s FASDs Prevention Project
The project, funded by a cooperative grant from the Health Resources and Services Administration, informs and educates health care professionals/providers about the risks alcohol can pose to an unborn child. Up to 25% of woman continue to drink during pregnancy. Research with health care professionals and women of child-bearing age indicates that many professionals/providers still advise women that light to moderate consumption of alcohol, especially later in pregnancy, is safe. The prevalence of FASD supports the need for more education, alcohol screening, and intervention with women at risk of alcohol-exposed pregnancy. To that end, The Arc has created an FASD prevention toolkit for health care professionals to reinforce the message that no amount of alcohol is safe during pregnancy.
In addition to FASD prevention efforts, The Arc partnered with various organizations, including the Center for Disease Control (CDC), to create and promote an informational toolkit to help spread FASD awareness to all women of child-bearing age. With nearly half of all US pregnancies being unplanned, the awareness of the effects of alcohol on the developing fetus is an imperative message to provide to women.
NCCJD is a training and technical assistance center funded by the Bureau of Justice Assistance whose mission is to pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses. People with I/DD are disproportionately represented in the criminal justice system. People with FASDs are more likely to be arrested and imprisoned, and are often repeat offenders—it is difficult for a person with an FASD to fully comprehend the rules and regulations of the court and probations systems, and they are often not adequately supported in navigating the criminal justice system. 50% of people with FASDs have a history of confinement in jail, prison, a residential drug facility or psychiatric hospital and the average age that children with FASDs begin to have trouble with the law is 12.8. These are statistics that NCCJD is working to change.
Self-Advocates With FASD in Action (SAFA)
SAFA is the nation’s first self-advocacy group created by and for people with FASDs in March 2011. Despite doubling in members, the group held their last face-to-face meeting in May 2012. SAFA is currently seeking support to continue their in-person meeting, and grow the network to include more local groups nationwide. With proper funding, they also hope to create a certificate program for members to take that will enable them to create presentations on FASDs to present to the community.
Anna is a founding member who is currently working in her home state of Alaska to help others with FASDs advocate and speak up for themselves. She worked at the Center for Human Development (the University Center for Excellence in Developmental Disabilities) and has been a member of the Governor’s Council on Disabilities and Special Education (The Council on Developmental Disabilities) for 10 years. Anna uses her voice and personal experience to help educate Alaska native people, women, and people who live in rural places about the effects of FASDs. Interested in learning more, or contributing to SAFA?
The Arc and the CDC, along with partners such as NOFAS, Better Endings New Beginnings, and SAMSHA FASD Center for Excellence, are dedicated to providing accurate information to the public, in order to help raise awareness to the 100% preventability of FASDs.