1. Building a State System in Ohio for Fetal Alcohol Spectrum Disorders
By:
Larry Burd, Ph.D.
Director
North Dakota Fetal Alcohol Syndrome Center

2. The National Center on Addiction and Substance Abuse, 1999
3.9 Million Births
1,560,000 Exposed
137,000 Frequent heavy drinking
39,000 FASD
The National Center on Addiction and Substance Abuse, 1999

3. The National Center on Addiction and Substance Abuse, 1999
Lost productivity due to FAS: Adults - $1,000,000,000/annually $2,739,000/day
Health care costs due to FAS: Children and adults $2,000,000,000/annually $5,479,000/day
The National Center on Addiction and Substance Abuse, 1999

4. FAS in Ohio
Born Each Year
FAS 302
ARND 1211
Total 1513

5. Cost of FASD in Ohio Cost Per Day $667,662 Annual Cost $301,330,935
Annual Cost Special $57,634,080 Education and Juvenile Justice
5 year Costs $1,218,484,276

6. Family History
Familial
Multigenerational
Genetic Factors

7. THE MOMS Age 27.4 Education 10.6 Unmarried 63% Smoker 82% Alcoholic
10+ years
Heavy Drinker
> 10 day +
Treatment
> 3 (45%)
Minority
73%
Poor +
Poor Diet
Parity 3
Prenatal (1st) 1
Prenatal visits
<3
Maternal Deaths
2.8%
Number of prenatal complications
Number of prenatal visits
Monthly prenatal care starts
Birth weight
Number of malformations

8. THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic 12 + years
Heavy Drinker +
Treatment
> 3
Minority
60%
Poor
Other terminations
Number of prenatal visits
Number of prenatal complications

9. THE CHILDREN Age Diagnosis 7.1 years Older Sibs 2 Younger
Birth Defects
20%
Cerebral Palsy 6%
Mental Retardation
30%
ADHD
60%
Out of Home
85%
Head Injury
25%
FASD Deaths
Dead Sibling
2.4%
4.5%

10. THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic 12+ years
THE MOMS
Age 27.4
Education 10.6
Unmarried 63%
Smoker 82%
Alcoholic years
Heavy Drinker > 10 day
Treatment >3 times (45%)
Poor +
Poor Diet +
Parity 3
Prenatal (1st) 1
Prenatal visits < 3
Maternal deaths 2.8%
THE DADS
Age 30.8
Education 10.9
Unmarried 63%
Alcoholic years
Heavy Drinker +
Poor +
THE CHILDREN
Age diagnosis 7.1 years
Older sibs 2
Younger 2
Birth defects 20%
Cerebral Palsy 6%
Mental retardation 30%
ADHD 60%
Out of Home 85%
Head Injury 25%
FASD Deaths 2.4%
Dead Sibling 4.5%

11. Increased Risk of Having a Second Child with Fetal Alcohol Syndrome
Total number of live births after birth of FAS child
Number of children with FAS in subsequent births
Estimated incidence of FAS per 1,000 live births
Incidence of FAS in subsequent births per 1,000 live births
Risk increased by 35 27
.97
771
795x
Source: E.L> Abel, Fetal Alcohol Syndrome in Families,
Neurotoxicity and Teratology (1988), 10, pp.1-2. Copyright 1988 by
Elsevier Science, Adapted with permission of the publisher.

12. Bottom Line
Recurrence is a sign of Failure of Our Public Health Systems

13. MATERNAL RISK SCORE SCORE
____Age Over 25 years ____Unmarried, Divorced, Widow, Living with Partner Check any one,
____On AFDC, WIC, Social Security or Income < $16,000 Per Year Add 5 ____Did not Graduate From High School ____Poor Diet ____Smokes More Than ½ Pack per Day ____Drinks less than 2 days/week & less than Check here, drinks /drinking day Add 20 ____Age First Drunk Less Than 15 years ____In Treatment Over Three Times ____In Treatment in Last 12 Months Check any one, ____Previous Child With FASD, Add or Developmental Disability ____Previous Child Died
____Children Out of Home (Foster Care or Adopted) Check any one, ____Heavy Drinker (3 or more days per week or over 3 drinks Add per drinking day) ____Uses Inhalants, Sniffs or Illegal Drugs Score Risk Category Recommendations None Standard Prenatal Care Low Standard Prenatal Care Moderate Standard Prenatal Care and Patient Education on FAS High High Risk pregnancy, Alcohol-Drug Abuse Treatment Very High High Risk Pregnancy, Inpatient Treatment Total Score
Prenatal
Copyright 2000

14. Exposure

17. Assessment of Exposure During Pregnancy
On average how many days per week did you drink during pregnancy? _____(a)
On an average drinking day during pregnancy how many drinks did you have? _____(b)
How many days per week did you have 4 or more drinks? _____(c)
Exposure Parameters (Cumulative exposure during pregnancy)
Pregnancy Drinking Days = ( a x 40 ) = _____(d)
Estimate of number of drinking days during pregnancy.
Percent of Days Exposed During Pregnancy = ( d ÷ 280 ) =
Estimate of days exposed during pregnancy _____
Number of Drinks During Pregnancy = ( a x b x 40 ) =
Estimate of number of drinks during pregnancy _____(e)
Ounces of absolute alcohol = ( e ÷ 2 ) = _______
Estimate of exposure to absolute alcohol during pregnancy.
Binge days = (c x 40) = _____(f)
Estimate of number of binge days during pregnancy.

18. Maternal Risk Questionnaire
Unmarried, Divorced, Widowed, Living with Partner pts
Did not graduate from high school pts
Children out of home (foster or adopted) pts
Have Four or more children pts
Smoke more than 1 pack per day pts
In chemical dependency treatment pts
Alcohol Use:
None pts Low pts
Moderate pts High pts

20. Diagnosis

21. Phenotype Detectability
High
Phenotype
Detectability
Low
Birth 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36
Age in Years
Criteria are Age Dependent

22. Impairments in:
Memory
Attention
Adaptive behavior
Use of social rules
Sleep
Behavior regulation

23. Highly Variable Phenotype
Syndromal Variation
Highly Variable Phenotype CL
& P
Mortality
ADHD
Learning
Disabilities
Pregnancy
Losses
Hearing
Improvement
Number of Cases
Mental
Disorders
Fertility
Visual
Impairment
Birth Defects
Severe
Cognitive
Deficits
Infectious
Illness
Increased
Severity
Classic
Phenotype Variation

24. FASD is mostly mental health
ADHD
Learning disabilities
Depression
Sleep

25. Treatment of FAS Start early-Avoid Abuse Avoid multiple foster homes Treat in community Make a place in the community Avoid problem peers Use legal system Long term treatment-more than 10 years

26. Behavior Disorders Its brain damage AND behavior
Ignore it (works for young children)
Doesn’t work for wives
Doesn’t work for older children
ATTEND to desirable behaviors
Catch em being good

27. Common Recommendations
Annual Evaluation
Positive Behavior Management Program
Respite Care
IEP
Monitor Peers
Schedule
Plan Ahead
Evaluate All Siblings
Find the Mom

28. Paying Our Own Way

29. Money Spent on People with FAS
Funding Services
Money Spent on People with FAS
“We have no funding.
You are not eligible.”
FAS Prevention

30. Cost of Care for FASD Paying Upfront
On the day before the child with FASD is born we need to deposit over $540,000 in the bank to cover the lifetime cost of care.

31. State Capacity and Prevention

32. Every State Prevention Early identification Better Treatment
Local Resources
Prevent Recurrence
State Task Forces
Parent Groups

33. What Can We Do Now? Community Assessment FASD Task Force
Inform Policy Makers
Inform Policy Implementers

34. Cost per Case Prevented
Prevention of FAS
10-18 cases of FAS born each year in ND.
Treatment 50% Effective
Alcohol Use &
Other Risk Factors
Risk of
FAS
Women
Treated
Quit *
Cases
Prevented
Cost per Case Prevented
Daily Alcohol Use
0.01%
20,000
10,000 1
$100,000,000
Heavy drinkers, middle class, non-smokers
.29%
690
344
3,450,000
Heavy drinkers, low in-come, smokers, poor diet
4.3% 47 23
235,000
Women who have had a previous child with FAS
75% 3
15,000
* Quit after one year.

35. Figure 1. The cumulative cost savings, over a 20 year period, of preventing one case of FAS each year

36. Why Screen for FASD? Case finding Prevalence
Increased efficiency of diagnostic services
Where foster care, birth defects clinic, treatment programs for women-

37. Estimating Capacity: Need for Diagnostic Services
FAS Cost and prevalence.

38. Our One Year Anniversary
New cases of FASD in Ohio
1,592
What have you done?