Funded Projects

FASD Awareness and Support in California

Project Year

2024

City & State

Sacramento, California

Program Name

CATCH Implementation

Topic

CSHCN/Disabilities

Program Description

The Problem & Project Goals: Fetal Alcohol Spectrum Disorders (FASD) are birth defects and developmental disabilities linked to prenatal alcohol exposure.  FASD is a range of heterogeneous disorders that require knowledgeable, dedicated professionals who provide support across all settings.  FASD is highly prevalent yet underrecognized by primary care providers.  Lack of awareness leads to missed or late diagnosis and prevents individuals and families from accessing much needed services and support.  Our goals are to raise awareness of FASD among primary care providers in California by creating a training video and a professional manuscript and to support families of newly diagnosed individuals with FASD with a resource toolkit and plain language summary of the manuscript.  These products will be informed by the lived experiences, strengths, challenges, and needs of teens and adults with FASD and their parents through interviews and focus groups.   FASD affects 1 in 100 to 1 in 20 children in the United States – approximately 1-5% of 1st-grade children.i  A 2018 literature review estimated that the annual economic impact of FASD on U.S. health care, special education, residential care, the criminal justice system, and lost productivity is $205 billion.ii  Individuals with FASD are at increased risk for adversity, especially those living in foster care, those with mental health challenges, and females.iii  Despite this high prevalence and societal cost, FASD is a largely hidden disability that is not recognized by physicians, teachers, and service providers.  Without adequate support, teens are at increased risk of substance abuse, incarceration, mental health disorders, and suicidality.iv  Yet people with FASD have many unique strengths including talents, resilience, self-advocacy, and hope.  When supported by safe, stable nurturing home environments, early diagnosis and intervention services, and social support, they can thrive.   Primary Setting: the FASD Network of Northern California and the FASD Network of Southern California.      Proposed Interventions & Number of Children Affected: To better understand the lived experiences, strengths, challenges, and needs of individuals and families affected by FASD, we will conduct interviews and focus groups with 15 teens and adults with FASD and their parents living in California.     We will use our findings to develop a training video and professional manuscript to raise awareness of FASD among primary care providers in California.  The training video will be used in presentations to our community partners, including the CIRCLE Clinic, the UC Davis Pediatric program, and the Sacramento County Office of Education Infant Development Program.  We will also use our findings to directly support individuals and families affected by FASD by developing a resource toolkit and a plain language summary of the manuscript for families.   These resources will be available to all families who utilize the FASD Networks of Northern and Southern California and the Behavioral Evaluation for Alcohol-Related Syndrome (BEARS) Clinic at UC Davis MIND Institute.  We anticipate that each month our toolkit will help at least 10 families from the Network support groups and at least 4 families from the BEARS Clinic at MIND Institute.     Anticipated Outcomes: Through interviews and focus groups, we will better understand the lived experiences, strengths, challenges, and needs of teens and adults with FASD and their families living in California.  We will use our findings to raise awareness of FASD among primary care providers in California by creating a training video and publishing a professional manuscript.  We will directly support children, teens, and adults who are newly diagnosed with FASD by creating a resource toolkit and plain language summary for them and their families.  

Project Goal

To raise awareness of FASD among primary care providers in California and to create resources for families affected by FASD informed by their lived experiences, challenges, strengths, and needs.

Project Objective 1

To improve our understanding of the lived experiences, challenges, strengths and needs of individuals and families affected by FASD by identifying key themes from interviews and focus groups.

Project Objective 2

To raise awareness of FASD among primary care providers in California by developing a training video based on analysis of the recorded interviews and focus groups and to develop a professional manuscript by June 2025.  The video will be used in presentations for primary care providers and community organizations.

Project Objective 3

To directly support individuals and families affected by FASD through creation of a toolkit that will help families better understand FASD and the supports and services available to them after diagnosis, as well as a plain language summary of the manuscript by June 2025.

AAP District

District IX

Institutional Name

UC Davis

Contact 1

Julie Law, MD