Red Shoes Rock honors the FASD pioneer –
Juvenile Judge Hon. Susan Carlson – Thank you!
Susan Shepard Carlson is founder of the Minnesota Organization on Fetal Alcohol Syndrome, a retired Hennepin County judicial officer and former first lady of Minnesota.
Twenty years ago, the Hon. Susan Carlson, JD had a big idea: to create an organization that would become a hub of hope for people living with Fetal Alcohol Spectrum Disorders (FASD).
She also had a dream of creating a world where women do not drink while they are pregnant. Over the past two decades much has been accomplished. Far more people are aware of FASD, the challenges faced by people who have this disability, and the vital information that there is no safe level of alcohol during pregnancy.
She is the former First Lady of Minnesota (1990-1998) and wife of Governor Arne Carlson. She is a confident presence in Minnesota, the nation and the international FASD community. She is a friend to many.
A lot has happened in Minnesota since 1997.
Hon. Susan Carlson, JD experiences in juvenile court led to Minnesota’s efforts in combating the harmful effects of prenatal alcohol exposure. She had consistently seen similar behaviors, looks and sizes of young people in juvenile courts that continued to present challenges in the judicial process—from questioning, through arrests, during hearings, sentencing, and detention/confinement.
Something was affecting these individuals compentency and/or culpability.
What was it? Did we need new measures to reduce chance of recidivism? Could we stop future criminal behavior?
The answers to her questions all pointed to one common thread — prenatal alcohol exposure. She had judged the cost. This was REAL! She had been witness to results—and repeated results—repeated again. Something had to be done!
Carlson launched an initiative to promote education and prevention about FASD in 1997 and she co-chaired the Minnesota Governor’s Taskforce on FAS, resulting in almost $7 million annual funding for FASD prevention and intervention services. Susan is now retired as a juvenile district court referee.
Rolling up her sleeves to make a difference she founded the Minnesota Organization on Fetal Alcohol Syndrome.
Since 1998, MOFAS has been the hub of hope for families affected by FASD, guiding and supporting families through the FASD journey. MOFAS is the first affiliate (charter member) of NOFAS (National Organization on Fetal Alcohol Syndrome).
“The first Minnesota bell concordance and FASDay was celebrated at the Federal Courthouse steps in Minneapolis on September 9, 1999 at 9:09 am. I was proud to step out with the former First Lady and share our family’s truth of living with fetal alcohol and how it affects our citizens. My daughter, Liz Kulp, joined us in that speech. It was her first step forward in advocating for herself with respect for her disability. Thank you, Susan for that opportunity,” shared Jodee Kulp
Susan trains and speaks around the country on FASD and its social implications. She is the author of “Tools for Success,” a training guide for juvenile justice professionals.
“In my 20 years of involvement in this issue, I have never heard a mother say that she intentionally drank alcohol to harm her child,” shares Susan.
A goal for Susan and MoFAS is eliminating disability caused by alcohol consumption
MOFAS zeros in on a strategy to prevent prenatal alcohol exposure in complex cases. Although the science is clear that there is no known safe level of alcohol during pregnancy, many people need more than this knowledge to have an alcohol-free pregnancy.
A 2017 Centers for Disease Control and Prevention (CDC) study found Minnesota women to have the fourth-highest level of binge drinking in the U.S. at 22.6 percent.
The prevalence study confirmed that binge drinking is driving up the numbers of children with FASD. Particularly alarming is that Minnesota ranks higher in binge and excessive drinking than do the states in this study.
MOFAS advocates for a program called Family-Centered Long-Term Recovery Supports, which addresses root problems for women with a history of substance use disorders who are pregnant or parenting young children. The program works by connecting participants to existing community resources at a cost of only $705 per family per year. Only four of 298 participants birthed babies with prenatal substance exposure over a period of 3.5 years.
“FASD has been around as long as humans and alcohol have co-existed, yet prenatal alcohol exposure continues,” says MOFAS Executive Director Sara Messelt. “But we know what works and have an ambitious goal to prevent FASD entirely in Minnesota in the next twenty years.”
Increase Diagnostic Centers
Minnesota has fewer than 1,000 FASD diagnostic appointments a year, whereas 7,000 babies with prenatal alcohol exposure are born in Minnesota annually. An accurate diagnosis can help someone with an FASD reach their full potential, paving the way to needed services and supports, stronger treatment plans, greater understanding and acceptance, more realistic expectations, and better quality of life.
After advocating for greater diagnostic capacity with unsatisfactory results, MOFAS opened its own clinic—the second-largest in the state—in 2012. The clinic both alleviates some of the diagnostic capacity shortage and in its first year the clinic assessed 11 patients, and in 2017 it assessed 112 patients.
Provides a legislative voice
Since 2008 MOFAS has organized FASD Day at the Capitol and brought in state-wide advocates. In 2018, 183 advocates attended and met with 68 legislators. Examples of legislation MOFAS has been instrumental in passing include:
- Adding FASD as a “related condition” within the definition of “disability”
- Securing a funding for the Family-Centered Long-Term Recovery Supports program
- Appropriating funding from the Minnesota Department of Health to carry out MOFAS mission
- Requiring paraprofessionals working with students on the spectrum to receive training on FASD
- Requiring foster parents to receive one hour of training in their first year of licensure
Increase knowledge for professionals, families, and individuals with FASD with training and education
MOFAS trained over 6,500 people last year—or 600% more than in 2005, the last year for which the organization has complete records. They host a fall conference and provide caregiver support groups throughout the state of Minnesota.
“When educators, therapists, and other professionals are having a hard time working with someone and have no idea why, sometimes it’s because the person has an unidentified FASD, or because the professional doesn’t understand the person’s disability,” says Messelt. “Learning about FASD and gaining some strategies can make all the difference toward outcomes like helping a student truly have access to education and helping a client benefit from treatment.”
MOFAS reaches out to families
FETAL ALCOHOL SPECTRUM DISORDERS – What you need to know to help your clients — Presented by the American Bar Association Section of Litigation and the ABA Center for Continuing Education. Melodee Hanes, Acting Administrator of the Office of Juvenile Justice and Delinquency Prevention, Washington, D.C. Dr. Pi Nan Chang, Founder Director Emeritus of Pediatric Psychology, Department of Pediatrics at the University of Minnesota. Kathy Mitchell, Vice President, National Organization for Fetal Alcohol Syndrome, Washington, DC Billy Edwards, Los Angeles County Deputy Public Defender, Los Angeles, CA Anthony P. Wartnik, Judge (Retired), APW Consultants/Legal Director of FASD Experts, Mercer Island, WA