Community Based Assessment of Services for Children and Adults With Fetal Alcohol Syndrome and Related Disorders by Larry Burd, Ph.D. Director, North Dakota FAS Center 1300 S. Columbia Road Grand Forks, ND 58202 701 780-2477 web site: www.online-clinic.com Copyright 8 1998 Fetal Alcohol Syndrome in Our Community This tool was developed to assist communities in conducting a review of services or planning to develop services for children, adolescents and adults with fetal alcohol syndrome (FAS), fetal alcohol effect (FAE) and other neurodevelopmental disorders (ARBDND) caused by prenatal alcohol use. Most treatment programs or public agencies have found it helpful to identify a group of key informants to spend the day required to complete this review. It may be helpful to divide up the form and ask each person to complete a section prior to the meeting. The information required may need to be obtained from several sources. The tool will provide an inventory of existing services and expertise. The starting points of discussion in the planning meeting will be on the available services. The planning can begin with identified service needs (the questions and topics on which no data is available). In most cases the work group would then schedule a review and planning meeting. At this meeting an action plan can be developed for an individual agency or for a governmental agency. Good luck. Call if you have questions. Facts About Fetal Alcohol Syndrome (FAS) and Related Disorders Fetal Alcohol Syndrome is the leading cause of mental retardation induced by a teratogen in the western world. FAS and other alcohol-related birth defects and neurodevelopmental disabilities (ARBDND) affect 1% of all live births. In the U.S. we have 4 million live births annually. The number affected by FAS and ARBDND would be 40,000 annual cases. This would be comprised of 4 to 8 thousand cases of FAS and 32,000 to 36,000 cases of birth defects, behavior disorders or neurological defects caused by fetal alcohol exposure. The total number of affected people from birth to 65 years of age would be 2,600,000. What problems will they have? In a large study of adolescents and adults with FAS and other problems resulting from prenatal exposure to alcohol in the state of Washington they found: that people with FAS have an average IQ of 79; for people with FAE or ARBDND the average IQ was 90. ! Nearly all had reading and spelling levels below their IQ ! Only 10% lived independently ! 60% had disrupted school experience (defined as having been suspended or expelled from school or having dropped out of school) ! 60% had trouble with the law (defined as ever having been in trouble with authorities, charged, or convicted of a crime) ! 50% had confinement (including inpatient treatment for mental health problems or alcohol/drug problems, or ever having been incarcerated for a crime) ! 50% had inappropriate sexual behavior ! 30% had alcohol/drug problems ! 30 women with FAS/FAE had given birth to a child. Of these 57% no longer had the child in their care; 40% were drinking during pregnancy; 17% had children diagnosed FAS or FAE; and an additional 13% had children who were suspected by the informants of having FAS/FAE. Our Community ______________________________________________________________________________ This can be our city, our state, or any definable area. How many people live here? What is our community? Put a simple map of our community. Community Resources for Screening and Identification of FAS ______________________________________________________________________________ How many children are born in our community each year? Number of children birth through 18 years of age in our community? Does our community screen for FAS area? If yes, how? How many children have been screened? How many were diagnosed with: Fetal Alcohol Syndrome __________ Fetal Alcohol Effect, __________ Alcohol related neurodevelopmental disability __________ Alcohol related birth defects __________ Where were these children referred for evaluation? What is the cost of an evaluation? Who pays for the evaluations? If they are diagnosed with FAS, are their birth mothers contacted about alcohol treatment? Alcohol Treatment ______________________________________________________________________________ Do prenatal care providers screen for alcohol use during pregnancy? Do we have an alcohol treatment program in our community? If not, how far away is the closest one? Do they accept pregnant women? How would pregnant women be referred? In last year have any been referred?__________ How many? Do they have a waiting list? If a woman had children how would the woman=s children be cared for during treatment? How is alcohol treatment funded? Do these programs have follow-up data? Number of women treated in last 3 years? Number and percent not drinking again in: One year: Two years: Do the alcohol treatment programs adapt their treatment for clients who have FAS or FAE? How? Our Schools ______________________________________________________________________________ Have our schools had an inservice on FAS?_____________ When? Do they have children diagnosed with FAS?_____________ How many? Do they have children diagnosed with ARBDND?_____________ How many? How are these children served: 1. How do they become eligible for services? 2. What services are provided? Have the teachers for these identified children had an inservice on FAS/ARBDND? Do the colleges and universities have coursework in FAS/ARBDND? Is alcohol discussed in the elementary school curriculum? Is alcohol discussed in the junior high curriculum? Is alcohol discussed in the high school curriculum? Services for Persons with FAS ______________________________________________________________________________ 1. What services are available for people diagnosed with FAS/ARBDND? children? adults? 2. How are these services funded? 3. What prevention efforts have taken place or are ongoing? 4. Do we have enough cases to form a support group for caregivers? 5. Can suspected cases be diagnosed in our community? If yes, where: Who provides the evaluations? What does it cost? 6. Are persons in the criminal justice system screened for FAS/ARBDND? Estimating the Number of Affected Persons in Area If you would like more specific FAS prevalence data or prevalence data on alcohol related disabilities or cost data, access the web site www.online-clinic.com then Fetal Alcohol Syndrome, then Cost and Prevalence Calculator. ____________________________________________________________________________________________ In order to estimate the number of potential people in a state, province or county with one of these problems use this worksheet. Prevalence of FAS Total population of state, county or providence __________ x 2.0 per 1,000 = _________ cases of FAS (ex. population of North Dakota 660,000) 660 x 2.0 = 1320 cases of FAS Prevalence of FAE, and other alcohol related disorders total population _____ x 8.0 per 1,000 cases of FAE or ARBDND _______cases of FAE or ARBDND (ex. 660,000 people) 660 x 8.0 = 5280 cases Total affected population in area = 5280 + 1320 = 6600 total cases _______Total affected population Our Community FAS Task Force Date of first meeting Location We need: Alcohol treatment management Alcohol treatment staff Social services Law enforcement Health care provider School personnel Judicial system Funding agencies FAS expert Who will mail invitations? Mail invitations to: We need to personally call or visit: Topics for meeting: 1. Review findings from community assessment 2. What are we doing about treatment of people with FAS and ARBDND in our community? 3. How many suspected cases do we have? 4. How many diagnosed cases do we have? 9