Awareness of fetal alcohol spectrum disorders (FASD) is growing, as are advocacy efforts in Minnesota. The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) had a record turnout for the February 27 FASD Day at the Capitol. More than 130 people from across the state signed up for this year’s event, which organization leaders said is an unprecedented number. Three busloads of people attended from the Iron Range.

Advocates clad in bright purple T-shirts gathered at Christ Lutheran Church to meet lawmakers and review 2018 legislation, then headed to the capitol to join the bigger Disability Day at the Capitol rally. Two young people who live with FASD told rally attendees how they struggle to do day-to-day tasks and keep their emotions in check.

MOFAS has worked with Minnesota families since 1998.

Consumption of alcoholic beverages during pregnancy has long been known to be a health risk before birth. But only recently has more been known about the extent of FASD in society. A national report released in February indicated that as many as one in 20 first graders have an FASD. That is more common than autism, according to MOFAS.

The damage done by alcohol to a developing fetus can result in physical disabilities including growth deficiencies, facial abnormalities and organ and brain damage. Cognitive disabilities can include behavioral issues and learning disabilities. The conditions are lifelong and irreversible. There is no cure for FASD.

The national findings have energized the Minnesota advocates. MOFAS Executive Director Sara Messelt said the organization is taking four key priorities to the Minnesota Legislature this session. One is to expand the definition of a brain injury to include the congenital injuries caused by prenatal exposure to alcohol.

“What people don’t realize is that fetal alcohol syndrome is a brain injury that occurs before birth,” Messelt said. But until changes are made to state law, people with FASD cannot receive the same intensive services that other people with brain injuries can benefit from.

“We want people to have the same access to services,” she said.

As of Access Press deadline, the bill had been introduced in the House but not in the Senate.

Other MOFAS-support legislation includes a requirement of one hour’s training for all non-emergency foster parents. Training would provide an overview of FASD, effective parenting strategies, resource information and referrals for support. Currently only newly licensed foster parents must have FASD training in their first year.

MOFAS will also spend the 2018 session and beyond to promote health issues. One effort will promote continued community-based services for pregnant women and mothers with histories of substance use disorders to help them stay healthy, maintain sobriety and be good parents. The services are known as the Community of Recovery and Family Transitions (CRAFT) Project. During a 3.5-year period, CRAFT served 298 pregnant women trying to maintain recovery. Only four women had babies with prenatal substance use exposure.

MOFAS will also support programming to prevent prenatal alcohol exposure and improve quality of life for people with FASD. Since 2004, the Minnesota Department of Health awarded MOFAS a grant to develop a comprehensive strategy to address FASD through diagnostic services, community grants, intervention and family support, public awareness, and professional education. “This work remains critical and continues to require funding, given that FASD is still a sizeable public health issue,” MOFAS said in a statement.

A National Institutes of Health study of more than 6,000 first-graders across four U.S. communities has found that a significant number of the children have FASD, with conservative rates ranging from 1 to 5 percent in community samples. The new findings represent more accurate prevalence estimates of FASD among general U.S. communities than prior research. The study was funded by the National Institute on Alcohol Abuse and Alcoholism (NIAAA), part of the National Institutes of Health.

The study was conducted by the Collaboration on Fetal Alcohol Spectrum Disorders Prevalence consortium, which studies the prevalence of FASD among U.S. school children. Researchers collected data between 2010 and 2016 on 6,639 children in four communities in the Midwest, Rocky Mountain, Southeast and Pacific Southwest, sites that were selected to be more reflective of U.S. community populations than previous studies. At each site, first-graders in public and private schools were recruited across two academic years and evaluated based on the FASD criteria. Prenatal alcohol exposure was assessed by interviewing mothers or other close relatives.

Researchers found that the prevalence estimates for FASD among the selected sites ranged from 1.1 to 5 percent. This was the most conservative estimate and assumed that no additional cases of FASD would be found in first-graders who did not participate in the study. Using a “weighted prevalence” approach that assumed that the rate of FASD in children who were evaluated would be the same in all eligible first-grade children in each community, the estimated prevalence of FASD was higher—ranging from 3.1 to 9.8 percent among the study sites. Of the 222 children diagnosed with FASD in the study, only two had been previously diagnosed with FASD, although many parents and guardians were aware of learning and behavioral challenges. This finding suggests that children with FASD often go undiagnosed or misdiagnosed. Read the report at www.nih.gov.