Copyright 8 1998

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.

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.

This can be our city, our state, or any definable area. How many people live here?

What is our community? ___________________________________________________________________

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Put a simple map of our community.

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? ____________________________________________________________________________

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How many children have been screened? _______________________________________________________

How many were diagnosed with:

Fetal Alcohol Syndrome __________________________

Fetal Alcohol Effect, _____________________________

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? __________________

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? ____________________

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How is alcohol treatment funded? ____________________________________________________________

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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? ________________________________________________________________________________

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? ______________________________________________

In order to estimate the number of potential people in a state, province or county with one of these problems use this worksheet.

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

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

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: _______________________________________________________________________

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_____________________________________________________________________________________

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We need to personally call or visit: ___________________________________________________________

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_____________________________________________________________________________________

_____________________________________________________________________________________

_____________________________________________________________________________________

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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?