In the US, 1 in 20 school-aged children are estimated to have Fetal Alcohol Spectrum Disorders (FASDs).¹ FASDs are caused by prenatal alcohol exposure and can result in a wide range of mild to severe symptoms, including intellectual and learning disabilities, difficulty paying attention, vision or hearing impairment, language and speech delays, and more.²
Although FASDs impact thousands of Colorado families, many have limited access to information, diagnostic resources, and healthcare providers who are knowledgeable about these conditions. Policy change is needed at a state and federal level to ensure children and families have the resources and support needed to thrive.
Early Identification Strengthens Families
Knowledge of parenting and child development is one of five research-informed protective factors to strengthen families and prevent child maltreatment.³ FASDs are often misdiagnosed or underdiagnosed, inhibiting a child’s support system, including their parents, healthcare providers, and school, to help a child reach their full potential. When families and support systems have access to early intervention and information about how FASDs may impact a child’s development, they can better respond to a child’s needs and prevent child maltreatment. Policy change is needed to ensure all families impacted by FASDs have access to these vital services for children and families.
How Can Policy Change Support Families Impacted by FASDs?
With such limited awareness among communities, service providers, schools, and other systems that frequently interact with children with FASDs, there is tremendous opportunity for comprehensive legislation to address gaps in awareness and resources for families and children.⁴ Policy change is needed to:
- Expand funding for FASD prevention
- Enhance research efforts to increase understanding of FASD
- Expand funding to increase access to early intervention and treatment
- Train a widespread range of youth-serving professionals, including child welfare, medical, behavioral health, school, early childhood, and juvenile justice system professionals
In 2022, FASD United and its state chapters, including Illuminate Colorado, advocated for the FASD Respect Act, which would have expanded the federal response to FASD as a public health issue, including by establishing grant programs to meet the needs of people with FASDs. Unfortunately, this bill did not pass. FASD United is working to introduce the FASD Respect Act 2.0 during the 2023-24 federal legislative session. Illuminate Colorado and our network of Colorado FASD advocates will stay engaged to advocate for the success of this groundbreaking legislation.
Hear from Colorado FASD Awareness Advocates
Marilyn Fausset, M.Ed, Co-Chair FASD Awareness Work Group:
“What made it so hard for our family was that not a single medical or behavioral health professional was knowledgeable about fetal alcohol spectrum disorders (FASD); none realized that prenatal alcohol exposure was at the root of the problems for my child. Finally, I educated myself and sought out a provider able and willing to diagnose for FASDs. We finally got a fetal alcohol syndrome (FAS) diagnosis at age 23. This diagnosis led to the developmental disability (DD) services my adult child now receives. It is sad that we received so many incorrect diagnoses, which led to inappropriate interventions and delayed DD supports.”
Domenica Steele, MA, LPC-C, Co-Chair FASD Awareness Work Group
“I have nine children, five of whom have an FASD. My triplets were identified young and received early intervention services including speech, occupational therapy, physical therapy, and developmental intervention. I am convinced those services have changed the trajectory of their lives for the better! In addition to being an adoptive mother to children with an FASD, I am also a professional supporting families affected by FASD.
Caregiver distress rates are very high among caregivers supporting individuals with an FASD and part of the reason is struggling to obtain services for their family, managing difficult behaviors, and having limited resources available to them. Early intervention is critical not only for the affected child but for the whole family system. Accessibility to early intervention supports the whole family and helps families build a strong team of professionals for support and guidance.”
To learn more about the Colorado FASD Awareness Work Group, please contact Kelli Sutton, Strategic Initiatives Manager, at firstname.lastname@example.org.
- Centers for Disease Control and Prevention. (n.d.). Data & Statistics on FASDs. Retrieved From: https://www.cdc.gov/ncbddd/fasd/data.html
- Centers for Disease Control and Prevention. (n.d.). Basics about FASDs. Retrieved From: https://www.cdc.gov/ncbddd/fasd/facts.html
- Center for the Study of Social Policy. (n.d.) About Strengthening Families and the protective factors framework. Retrieved From: https://cssp.org/our-work/projects/protective-factors-framework/
- Seibert, J. H., Council, C. L., Besser, A. J., Hinde, J. M., & Karon, S. L. (2019). Fetal alcohol spectrum disorders: Policy challenges and opportunities. U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (ASPE). Retrieved From: https://www.rti.org/publication/fetal-alcohol-spectrum-disorders
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