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

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

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

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

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

Family History Familial Multigenerational Genetic Factors

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

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

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%

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 10+ 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 12+ 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%

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.

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

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, 2 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 35 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 45 per drinking day) ____Uses Inhalants, Sniffs or Illegal Drugs Score Risk Category Recommendations 0 None Standard Prenatal Care 5 Low Standard Prenatal Care 20-40 Moderate Standard Prenatal Care and Patient Education on FAS 45-50 High High Risk pregnancy, Alcohol-Drug Abuse Treatment 55-85 Very High High Risk Pregnancy, Inpatient Treatment Total Score Prenatal Copyright 2000

Exposure

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.

Maternal Risk Questionnaire Unmarried, Divorced, Widowed, Living with Partner 4 pts Did not graduate from high school 3 pts Children out of home (foster or adopted) 4 pts Have Four or more children 7 pts Smoke more than 1 pack per day 3 pts In chemical dependency treatment 3 pts Alcohol Use: None 0 pts Low 5 pts Moderate 10 pts High 15 pts

Diagnosis

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

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

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

FASD is mostly mental health ADHD Learning disabilities Depression Sleep

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

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

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

Paying Our Own Way

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

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.

State Capacity and Prevention

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

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

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.

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

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

Estimating Capacity: Need for Diagnostic Services www.online-clinic.com FAS Cost and prevalence.

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