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

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.” 

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While the exact number of people who have FASDs is unknown, it is estimated that up to 1 in 20 U.S. school children may have an FASD, with 1 in 7 pregnancies being alcohol-exposed. In Colorado in particular, an estimated 15.4% of pregnant individuals in our state drank alcohol during the last 3 months of their pregnancy, according to the most recently available Pregnancy Risk Assessment Monitoring System (PRAMS) data.

When children, adults, and families impacted by FASD receive appropriate diagnoses, supports, and services, secondary impacts of FASD—such as dropping out of school, getting into trouble with the law, and substance use—can be prevented, and impacted individuals and families can thrive.

While we know the importance of providing appropriate services for pregnant people impacted by alcohol use and families who are impacted by FASD, significant and concerning gaps in FASD-related preventive, diagnostic and clinical resources are common in Colorado and throughout the United States. 

The Time is Now!

This September, we have a particularly momentous opportunity to build on and improve our nation and the state of Colorado’s efforts to prevent alcohol use during pregnancy, support those who are struggling with alcohol use during the perinatal period, and provide concrete supports to individuals and families impacted by FASD. 

The “FASD Respect Act” (S. 2238 and H.R. 4151), legislation currently being considered at the federal level, would reauthorize vital funding for prevention, screening, identification, research, and FASD-informed services. 

It reauthorizes and strengthens existing federal FASD programs, replaces the defunct National FAS Taskforce with a National Advisory Council on FASD, and establishes a FASD Center of Excellence as the go-to entity for state, tribal and local governments and non-governmental stakeholders seeking to develop or improve best practices for prevention, diagnosis, and intervention services. Find more information about the proposed legislation here. 

How Can I Show My Respect for Coloradans Impacted by FASD?

Whether you are an individual Coloradan or a Colorado organization that cares about ensuring that those who are using alcohol during pregnancy and those impacted by FASDs are treated with the respect they deserve and receive the support that they need, we need YOU to help ensure that Congress passes this vital legislation. 

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