A new four-state program aimed at reducing the incidence of fetal alcohol syndrome is drawing fire from Indian leaders who say they’ve been excluded from the initial planning process. Project coordinators from Montana, South Dakota, North Dakota and Minnesota expect to receive nearly $3 million in federal funds for the first leg of the program, which will focus on high-risk populations, primarily Native Americans. But Indian leaders in Montana say the program was created without their knowledge, even though their reservations will be targeted for studies and prevention activities.
“Whenever the U.S. government creates something like this, we need to be involved in step one, not step 10,” says Fort Peck Tribal Executive Board member Patt Iron Cloud. Other tribal representatives have voiced similar concerns. But Deborah Henderson, a Montana Department of Public Health and Human Services administrator and the state’s coordinator for the program, says tribes are being encouraged to take part, and they’ll be asked to serve on an advisory panel being formed to develop prevention strategies.
“We’re certainly going to have tribal representatives,” she says. Henderson says tight timelines for submitting a proposal to the U.S. Department of Health and Human Services resulted in only a handful of people being involved in the process so far.
“We really didn’t have a lot of input [at the state level] either,” she says. “It had to be done very quickly.”
Fetal alcohol syndrome (FAS) and related afflictions are triggered by women who drink while pregnant. FAS can cause mental retardation, learning disabilities, neurological disorders and other birth defects. Statistics show American Indians have the highest incidence of FAS and related neonatal problems of any ethnic population in the United States, and that the four targeted states, which share a total of 33 Indian reservations, have some of the highest FAS rates in the country. In these states, researchers say, a child with either FAS or related fetal alcohol effects is born every seven hours. The lifetime cost of each person with the full syndrome is estimated at $1.4 million.
One of the first tasks of the new three-year program will be to gather more data about FAS prevalence. A variety of education and intervention projects designed to reduce maternal alcohol consumption will then be tried and tested. The first funding, about $2.7 million, is expected by the end of September.
“We have not yet begun our work in Montana,” Henderson says, adding that state officials are now visiting each of Montana’s seven reservations to better explain the parameters of the program.