Editor’s note: This is the first in a two-part series on fetal alcohol spectrum disorder, its cost to the state and how state funding impacts access to community-based healthcare services which vary from county to county.
Kirsten Grunnet felt desperate.
Her adopted daughter Anna, one of more than 50,000 Minnesotans struggling with fetal alcohol syndrome and the spectrum of disorders that accompany it, was in crisis.
And outside, swirling snow and howling winds made it almost impossible to get her help.
Because District One Hospital in Faribault does not have a behavioral health unit, getting assistance locally was a no-go.
While there are crisis units in other parts of southern Minnesota, including Mankato, during the night of that fearsome blizzard, they were all full, Grunnet said. She and her husband spent the night calling area hospitals, only to find there were no beds open for their 13-year-old, or at least none they’d be able to drive to in the middle of a snow storm.
Their daughter would have to wait out the crisis at home.
“It’s difficult when you are in a crisis,” Grunnet said. “You need to have the right support because you can’t just medicate a child.”
Services for families who have children with fetal alcohol spectrum disorders, commonly referred to as FASDs, are sporadic throughout southern Minnesota, Grunnet said. She and her husband moved to Faribault from the Twin Cities two years ago and have seen firsthand a disparity in the type of resources available.
One area Rice County lacks in is emergency care, Grunnet said. When her daughter was in crisis, there were few options.
An ‘invisible’ yet prevalent disorder
Fetal alcohol syndrome is a condition that results from exposure to alcohol during pregnancy, according to the Mayo Clinic. Sometimes called an “invisible” disorder because those who suffer from it are often misdiagnosed, underserved and misunderstood, FASD affects nearly 40,000 newborns a year in the United States.
Problems that may be caused by FAS include physical deformities, mental retardation, learning disorders, vision difficulties and behavioral problems. The problems caused by fetal alcohol syndrome vary from child to child, but defects caused by fetal alcohol syndrome are irreversible.
A lack of medical, mental health services
Other parents raising children with FASD echo Grunnet’s complaints, saying medical and mental health resources are lacking overall.
Kari Fletcher, former member of the Minnesota Organization for Fetal Alcohol Syndrome and the mother of an 11- and 16-year-old who both have FASD, said there is a need for more services south of the metro, especially in the field of mental health.
“We need mental health professionals that understand FASD, which is actually pretty rare,” said Fletcher, a Mankato resident. “A lot of mental health providers are not trained in recognizing FASD or diagnosing and helping families that have children with FASD.”
There are more therapists trained in FASD in the Twin Cities, said Fletcher. The Twin Cities-area is also where some of the nearest FASD diagnostic clinics are. The only one south of the metro is in Rochester. Local doctors often have difficulty diagnosing FASD and many parents need to visit the clinics to find out for sure if their children have FASD, Fletcher said.
“We had one medical doctor that looked at my son and said he didn’t have (fetal alcohol syndrome),” Fletcher said.
Children with FASD also need more support when it comes to education, Fletcher said. According to the FASD Center for Excellence, they often have lower IQs, impaired reading, spelling and math ability, and can have a hard time processing information.
The Cannon River Education Center in Faribault is one of the few places in southern Minnesota specializing in the teaching that Grunnet and her daughter need to help with education while having FASD.
The institution is one of the sparse specialized schools in the area, to the point where kids from Owatonna and Northfield also attend the institution.
CREC provides treatment therapy for half of Anna’s school day while focusing on education for the other half. The classes are of a smaller size to be able to give the children the specialized treatment they need.
“She gets a lot of attention,” Grunnet said. “I’ve been very impressed with the education she has received. It gives her a much broader range that is specific to her needs.”
CREC addresses the difficulties of educating children with FASD by dealing with issues in social and problem-solving skills that their students may have. Grennet noted that she has received more educational support in Rice County than she did with School District 196 in the Minneapolis and St. Paul area.
For local services, parents often need to advocate to make sure they are provided, Fletcher said. The Minnesota Organization for Fetal Alcohol Syndrome offers FASD training for schools, doctors and more, but parents often need to encourage their healthcare providers or teachers to get it.
Sara Messelt, the organization’s executive director, said the group offers FASD training to teachers, law enforcement professionals, county social workers and more.
Educators especially need to understand FASD and how to address it, she said. Though many districts do a great job at teaching FASD students, others do not, she said.
“What we need is a staff that is aware and educated and can look at the child’s educational needs and develop teaching strategies to address them,” she said.
Children with FASD often run into problems as adults, too, some of which have serious consequences but may arise because their disorder is misunderstood.
For example, individuals with FASD often become involved with the juvenile and criminal justice systems. A recent study found that 60 percent of subjects with FASD had been in trouble with the authorities, charged with a crime or convicted of a crime.
A 1996 Centers for Disease Control and Prevention study shows that those with FASD are more likely to commit inexplicably “foolish” crimes that most offenders would avoid. They are also more likely to repeatedly engage in relatively minor offenses, like shoplifting.
Fletcher, who has given talks on FASD and recidivism, says one of the reasons FASD sufferers re-offend is because of their difficulty learning.
“If you get arrested for shoplifting at Walmart, you would probably figure out you shouldn’t do that at Target,” Fletcher said. “It’s called generalized learning … kids with FASD don’t do that.”
As a result, those with FASD can end up in jail more than once. Because many police departments and state or federal judges do not have much experience with FASD or its effects, those with FASD often end up serving harsh or repeat sentences, Fletcher said.
“These people are ending up in the judicial system at an early age and really just cycling through it,” Fletcher said.
Few legal contingencies exist for those with FASD, though Alaska recently passed legislation that allows judges to reduce the sentences of people found guilty of non-violent crimes if they have FASD.
A preemptive approach
Because fetal alcohol syndrome is 100 percent preventable, nine months of alcohol free pregnancies could save Minnesotans millions.
State Sen. Carla Nelson, R-Rochester, has seen an Olmsted County program already have a strong impact.
The Community of Recovery Aiding Families in Transition (CRAFT) program, funded by a grant from the Minnesota Organization for Fetal Alcohol Syndrome and the Minnesota Department of Human Services, provides outreach and support to pregnant women and those who have young children with chemical health concerns.
Besides helping participants cope with past alcohol or drug use, the program offers parenting classes and social outings for moms and pregnant women.
“We’ve seen how effective this is,” Nelson said. “It provides services to chemically dependent women that other counties aren’t able to offer.”
Nelson credits the preventative practices of CRAFT’s services with having saved Olmsted county millions that would’ve been spent on caring for children afflicted with FASD.
The program helped avert an estimated 74 fetal alcohol syndrome births in a space of 60 months, according to published reports.
A child born with fetal alcohol syndrome will use about $1 million to $5 million in public services during the course of their life, according to findings of a national study.
While the CRAFT program has seen its success in reducing the number of kids born with FASD, the battle for a more complete set of services for FASD children continues.
“(More services) can impact families and the community as a whole,” said Grunnet. “I think children and individuals with disabilities can contribute and enrich a community. Every person has something to give.”
Jessica Bies is a reporter at the St. Peter Herald. Reach her at 507-931-8568 or follow her on Twitter.com @sphjessicabies. Chris Houck is a newsroom staffer for the Daily News. Reach him at 333-3130 or follow him on Twitter @FBONews.