Recently, I had a chance to talk with an aide from the 4th district represented by Congressman Ken Buck about the FASD Respect Act (H.R. 4151 and S.2238). This piece of legislation could change my family’s life and potentially prevent hundreds of thousands of...
September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month. As the Colorado affiliate of the National Organization on Fetal Alcohol Syndrome (NOFAS), our organization is raising awareness all month long to help more professionals, parents and caregivers identify FASD and build Colorado’s statewide capacity to support impacted families. To that end, we need to shine a light on the opportunity before Congress to support the FASD Respect Act right now.
The federal bipartisan, bicameral Advancing FASD Research, Services, and Prevention Act (S. 2238 and H.R. 4151), known as the FASD Respect Act, introduced this year would authorize $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.
Most importantly, the bill would create a structure for the development of well-informed public policy on FASD and would provide a clear, ongoing societal commitment to advancing research and ensuring essential services for persons with FASD and their caregivers.
FASD is a term used to describe a range of effects that can occur in a person exposed to alcohol before birth. Recent research estimates that up to 1 in 20 school-aged children in the United States may have an FASD.
People living with an FASD can reach 100% of their potential with early interventions and support from the community. Identification of an FASD—along with appropriate supports and services—can prevent secondary impacts like dropping out of school, getting into trouble with the law and alcohol and substance use. As Marilyn, a mother committed to sharing the experiences of her family impacted by FASD through story-telling emphasized the importance of a diagnosis in her most recent Becoming FASD Aware blog, “an evaluation from an FASD-aware neuropsychologist and the resulting report, with a fetal alcohol syndrome (FAS) diagnosis, helped me explain my son’s behaviors—like can’t vs. won’t. . . I now understand his behaviors in an informed light.”
However, alarming gaps in FASD-related diagnostic and clinical resources are common throughout the United States. In addition, though many states and local communities have programs and policies to help support FASD prevention, FASD-informed intervention practices and services are limited in most systems of care around the country, and the United States itself lacks a national agenda to unite government efforts towards a common goal.
Alcohol is the leading cause of preventable brain injury. No amount of alcohol is safe during pregnancy.
- Need a list of Colorado Providers knowledgeable about Fetal Alcohol Spectrum Disorders and able to diagnose?
- Want to connect with other parents and caregivers impacted by FASD?
- Can’t find local services or a determination of eligibility?
The FASD Respect Act lays the foundation to construct a national agenda to enhance:
- Programs and Funding for FASD Research
- Prevention, Screening and Identification Efforts
- FASD-Informed Services
Key Provisions of the FASD Respect Act
The bill’s key provisions would:
- reauthorize and strengthen existing federal FASD programs, including the Interagency Coordinating Committee on FASD;
- replace the defunct National FAS Taskforce with a National Advisory Council on FASD;
- establish new FASD programs on Building State and Tribal FASD Systems, Community Partnerships, Best Practices and Models of Care, Transitional Services and Demonstration FASD-informed Services for Individuals with FASD;
- provide funding to the Departments of Education and Justice for FASD education awareness and training; and,
- establish a FASD Center of Excellence as the go-to entity for State, Tribal and local governments and non-governmental stakeholders seeking to develop new or improve existing best practices for FASD prevention, screening and identification, diagnosis and FASD-informed intervention programs and services.
Together, we can ensure Colorado is equipped to support families impacted by FASD and prevent even more Coloradans from being impacted in the future. This FASD Awareness Month, join us in advocating for the passage of the FASD Respect Act to help develop the infrastructure to support Colorado families for years to come.
Participate in a virtual meeting with your member of the U.S. House of Representatives.
Congressional Representatives want to hear from you about why particular subjects/pieces of legislation are important to you. Individuals with lived and/or professional experience related to FASD are uniquely positioned to help their representatives learn about FASD and how the FASD Respect Act would improve the lives of impacted families in Colorado.
We are here to help! Illuminate Colorado and NOFAS are here to support you. If you would like to participate in a meeting with your representative, reach out to Cassie Davis and let us know who your representative is, and we will provide you with everything you need to schedule and host a meeting.
Not sure who your representative is? Find out here.
**We are particularly in need of constituents of District 1 (Representative Diana DeGette), District 3 (Representative Lauren Boebert), District 6 (Representative Jason Crow), and District 7 (Representative Ed Perlmutter) to schedule and participate in meetings.**
Ask an organization to sign on to the letter of support for the FASD Respect Act.
Whether its an organization you work for or are involved with, or a business, agency, non-profit or other organization that would support or benefit from the passage of The FASD Respect Act, ask them to sign this letter of support.
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