Transcript Identifying and Caring for Inmates with Fetal Alcohol

Fetal Alcohol Spectrum Disorders
What Is It and What Should We Do?
for Public Health
Carey Szetela, PhD
615 327-5909, [email protected]
Meharry Medical College, FASDsoutheast.org
Funding provided by the U.S. Department of Health and Human Services,
Centers for Disease Control and Prevention, Grant no. U84DD000882.
What non-prescription drug of abuse is
most damaging to fetal brain development?
Of all the substances of abuse (including
cocaine, heroin and marijuana), alcohol
produces by far the most serious
neurobehavioral effects in the fetus*
The most common preventable
developmental disability
*Institute of Medicine, Report on Fetal Alcohol Syndrome Diagnosis,
Epidemiology, Prevention and Treatment, 1996.
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What Every Woman Should Know
About Alcohol and Pregnancy
When a pregnant woman drinks alcohol, so does
her unborn baby. Read the 5 things every woman
should know about drinking alcohol during
pregnancy.
www.cdc.gov/Features/AlcoholFreePregnancy
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Objectives
1.
2.
3.
4.
5.
What is FASD?
Alcohol Use in Pregnancy
FASD Prevalence
Public Health Issues
Resources
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Fetal Alcohol Syndrome (FAS)
• A diagnosis with standardized criteria
• Must meet thresholds for wide-ranging
effects
– Facial
– Growth
– Brain, CNS
• Not always the most
severely affected
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What are
Fetal Alcohol Spectrum Disorders?
• Range of effects that can occur in a person
whose mother drank alcohol during
pregnancy – can be mild to severe
• Physical
• Mental, Learning Disabilities
• Behavioral
• FASD is not a Diagnosis
• Includes FAS
Bertrand J, Floyd RL, Weber MK. Guidelines for Identifying and Referring Persons with Fetal
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Alcohol Syndrome. Morbidity and Mortality Weekly Review. October 28, 2005 / 54;1-10.
Alcohol Risk in Pregnancy:
No Known Safe Amount, No Safe Time, No Safe Kind
Brain
Nerves
Brain
Stomach
Placenta
Fetus
Breast
Heart
Organs
Liver
Muscles
Kidneys
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Percentages of Past Month Alcohol Use
among Women Aged 15 to 44, by Pregnancy
Status: 2002 and 2003
Binge drinking defined as
5 or more drinks on one or
more occasions in the last
30 days. Heavy alcohol
use defined as 5 or more
drinks on 5 or more
occasions in last 30 days.
-National Survey on Drug
Use and Health. The
NSDUH Report.
Substance Use During
Pregnancy: 2002 and
2003 Update. June
2, 2005 (SAMHSA).
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FASD Prevalence
• CDC studies estimate FAS
at 0.2 to 1.5 per 1000 live
births
– higher prevalence in specific
subpopulations
• FASD w/o full FAS features
has higher prevalence
• Other studies estimate
FASDs at 1/100 live births
• FASD is often
unrecognized
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What Public Health Issues
Do We See?
Perceptions about Alcohol and Pregnancy
– Alcohol Use, Risk
– Pregnancy, Risk
Support for Children/Adults and their Families
– FASD Screening and Access to Care
– Need Evidence Based Best Practices
Justice Issues
– Response to Unlawful Acts by Persons w. FASD
– Response to Misuse of Alcohol in Pregnancy 10
Perceptions about
Alcohol and Pregnancy
• Alcohol Use
• Pregnancy
• Taboos
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Perceptions about Alcohol-Related
and Other Risks to Pregnancies
• Discuss attitudes towards pregnant women
who pose behavioral risks to the fetus
– Smoking, Rx or Illegal Drugs, Alcohol
– Not wearing a seat belt
– Health conditions that pose risk (diabetes)
– Assisted reproductive technologies (increased
rates of multiple births)
– Others
• Are there taboos that interfere with
discussing these risks?
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Cocaine / Other Drug Use
in Pregnancy
JAMA Publication, Medline Review of 36 articles
Among children aged 6 years or younger, there is
no convincing evidence that prenatal cocaine
exposure is associated with developmental toxic
effects that are different in severity, scope, or
kind from the sequelae of multiple other risk
factors. Many findings once thought to be
specific effects of in utero cocaine exposure are
correlated with other factors, including prenatal
exposure to tobacco, marijuana, or alcohol, and
the quality of the child’s environment.
Prenatal care and drug tx… have been shown to
optimize infant outcome.
DA Frank, M Augustyn, W Grant Knight, T Pell, B Zuckerman. Growth, development, and
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behavior in early childhood following prenatal cocaine exposure. JAMA 2001:285:1613-25.
Do Health Providers Look for Alcohol
Risks to Women’s / Fetal Health?
• What counsel do they offer pregnant
women?
• What kinds of alcohol screening are
effective?
• What screening strategies enhance honest
answers to alcohol screening questions?
• What should health providers do if a
woman receives an “at-risk” or greater risk
screen for alcohol use?
– If not pregnant, and if pregnant
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Tough Conversations
for Health Providers
Some lament,
“We don’t know how to do it.”
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Effective Prevention Messages ?
Szetela / Hayes
FASDsoutheast.org
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Support for FASD-Affected
Children/Adults and their Families
•
•
•
•
Identifying the FASD-affected person
Access to Care
Best Practices
Need for Research
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An Invisible Disability
• IQ higher than functional intelligence
• Verbal skills relatively high
– Verbalize more than understand
• Areas of higher brain function allow person to
mask areas of deficit
• Social expectations are higher than ability
• Do not want to appear stupid
• Family dysfunction may supply wrong
primary explanation
• Mislabeled: ‘Stupid’, ‘lazy’, ‘defiant’
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Recognizing FASD:
Childhood and Adulthood
(Show pictures of affected people and
discuss what it takes for someone to be
identified (or not) as having an FASD)
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Executive Functioning
Ability to maintain a problem solving set to attain a
future goal
– Requires planning, mental representation and
inhibition
Deficits may include:
–
–
–
–
–
–
–
inadequate organization, planning, or strategy use
difficulty grasping cause and effect (consequences)
impaired judgment
concrete thinking (“take a cab home” = steal a cab)
lack of inhibition and ability to delay gratification
difficulty following multistep directions
inability to apply knowledge to new situations
(difficulty breaking routines)
J Bertrand, RL Floyd, MK Weber. Guidelines for Identifying and Referring Persons with20
Fetal Alcohol Syndrome. MMWR 2005
Personal Failings?...
[Re a meeting with teachers following Adam’s
delayed entry to high school]
“We listened to a recital of Adam’s failures,
shortcomings, recalcitrance. He continually
forgot the combination for his locker, he touched
other students “inappropriately,” he was
perpetually late to class, he ate his lunch b/f
arriving at school, he could not stay in his
seat…. Yet he had the ability, each teacher
stressed– he simply didn’t choose to use it.”
from Michael Dorris, adoptive father of child with FASD. From The Broken Cord,
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Harper and Row, 1989. p. 129.
…or Brain Disorder?
[of our 17 year old son, “Adam”]
“He takes something that doesn’t belong to
him, or he gets goaded into going to his
boss and saying cuss words he doesn’t
understand. Try to explain to that man
how bad judgment is not a matter of
simple intelligence or an indicator of a
rotten person, but just inability, absolute
inability.”
from Michael Dorris, adoptive father of child with FASD. From The Broken Cord,
22
Harper and Row, 1989. p. 217.
Caregiver Survey:
People Aged 6-51 with FASD*
• 94% ages 6–51 mental health problems
– 23% mental illness requiring inpatient care
• 83% experienced dependent living (adults)
• 79% have employment problems (adults)
Ann Streissguth
Among age 12+
• 60% have trouble with the law
• 49% repeated inappropriate sexual behavior
• 61% disrupted school experience (ie drop out)
• 35% have alcohol / drug probs
*[Not a representative sample of persons with FASDs.] Streissguth, AP, Bookstein, FL, Barr HM,
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et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects.
Develop Behav Peds 2004. 25:228-238.
CAPTA* 2010: Newborns with FASD
• Modifies earlier CAPTA language that mandates
healthcare providers to identify and make “appropriate
referrals” to CPS for newborns affected by prenatal drug
exposure, and to develop service “plans for safe care” of
the child
• Newly added category: newborns diagnosed with a fetal
alcohol spectrum disorder (FASD)
• Expected outcome is that more newborns will be referred
to state CPS programs
• However FASD is considered difficult to identify in the neonate
[…Not intended to have states make prenatal alcohol or drug exposure a category of child abuse or
neglect or to make those children subjects of mandatory reporting laws. Congress carefully chose the
word “referral” to avoid that. Rather, the goal is to address the safety and well-being of these children.]
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*Child Abuse Prevention and Treatment Act
From ABA, http://apps.americanbar.org/litigation/committees/childrights/content/articles/010311-capta-reauthorization.html
AAP* Call to Action 2010
• Pediatricians should consider
FASDs when evaluating children with
developmental problems, behavioral
concerns, or school failures
• Children with FASD need a pediatric
medical home to provide and coordinate
care and ensure necessary medical,
behavioral, social, and educational
services
*American Academy of Pediatrics
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How to Initiate Evaluation
• Inquire about history of maternal alcohol use in
pregnancy. If present or unknown:
• Refer to: child developmental specialist,
geneticist, dysmorphologist, psychiatrist, or
FASD clinic
• Diagnosis involves multidisciplinary team:
Medical, Psychological, Social
• Sensitive Communication to affected person,
mother, family
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If No Conclusive Evaluation…
Evaluations may
be absent or
inconclusive:
Treat “as if” they
have FASD
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Need for Research on Best Practices
Align expectations with abilities
•
•
•
•
•
•
•
•
•
•
Highly structured environment and expectations
KISS, One step at a time (Keep It Super Simple)
Concrete language
Frequent reminders/prompts
Repetition, Reinforcement, Role Play
Mentoring
Appropriate medical management and medications
Flexibility with behavior violations (no expulsions)
Logical, immediate reward/correction systems
Advocacy, team support, recognize strengths too!
SAMHSA, FASD Curriculum for Addiction Professionals, Level One and Two, and Tools for Success 28
Curriculum: Working with Youth and FASD in the Juvenile Justice System: www.samhsa.gov.
Justice Issues
• The Justice Offender with FASD
• The Alcohol Misusing Pre-pregnancy or
Pregnant Woman
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Caregiver Survey:
FASD and Trouble with the Law
• 14% of children
• 60% of adolescents and adults
– shoplifting / theft (36%)
– assault (17%)
– burglary (15%)
– domestic violence (15%)
• 12 years and older: 35% ever incarcerated
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Caregiver Survey:
Inappropriate Sexual Behavior ….
Defined as repeated behaviors
Difficulty with concept of physical boundaries
– standing too close, touching, shows of “affection”
• Children: 39%
• Age 12 + adults: 49%
• Similar prevalence male and female
• Promiscuity, Exposing Self, Inappropriate
Advances, Statutory rape (consensual)
• Non-consensual sexual offenses, usually with
victims in the age range of 5-10
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“Lying” vs. “Confabulation”
•
•
•
•
Confabulation without ill-intent
Gaps in memory and understanding
May routinely fabricate info to fill these gaps
Trouble distinguishing fantasy from reality,
TV shows from reality
• So, confabulation as a life skill to help them
meet expectations to ‘make sense’
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Prevalence of FASD
in Corrections Settings
In response to a Q’airre to corrections
systems, of the 3mil+ offenders
represented, only 1 was reported to have
a diagnosis of FAS*
Nearly all affected people are undiagnosed
in corrections systems**
*Burd, Selfridge, Klug, Sakko. FAS in the US corrections system. 2003.
**Burd, Fast, Conry, Williams. Fetal Alcohol Spectrum Disorder as a marker for
increased risk of involvement with correction systems. J Psych and Law. 2010.
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FASD Prevalence Estimates in
Correctional Systems: … Review*
• 6 of 54 studies met eligibility for review
• Prevalence ranges from:
– Highest: 23 per 100 (in Youth Psych Svcs Inpt
Assess Unit) to
– Lowest: 1 per 100 (a theoretical lowest
prevalence extrapolated from general pop
prevalence)
– Mid: 3 studies average rate of about 10 per 100
*Popova S et al. Fetal Alcohol Spectrum Disorder Prevalence Estimates in
Correctional Systems: A Systematic Literature Review. Can J Public Health.
2011.
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Correx Prevalence Review Con’t
• “The studies… to date lacked rigour, used
different methodologies, and had small
sample sizes, and therefore might not be
generalizable.”
• “Precise evaluations are not yet feasible
since there are no widely used screening and
diagnostic tools to identify the number of
FAD-affected persons within the justice
system. However, some progress has been
made….”
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NPR: Supreme Court OKs
Foreign Lethal Injection Drug
Execution on Oct 26, 2010
NPR Oct 27
The judge who sentenced
Landrigan to death has
testified she would not
have imposed the death
penalty had Landrigan's
lawyer presented doctors'
reports and evaluations
that showed, at the time
of trial in 1990, that
Landrigan suffered from
fetal alcohol syndrome
and brain injuries.
This undated photo shows Jeffrey
Landrigan, who was executed by
Arizona on Tuesday after a U.S.
Supreme Court decision lifted a stay
on his execution. http://www.npr.org/templ
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ates/story/story.php?storyId=130866280.
Judicial Penalties for Alcohol
Abuse in Pregnancy
??
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The best way for society to deal with
an identified pregnant at-risk drinker
is:
A. Counsel against drinking and
recommend voluntary treatment programs
B. Restrain her from drinking with a
mandatory treatment program
C. Restrain her from drinking with
incarceration
D. All of the above
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E. Other
ACOG Opinion 321, 2005
Six Objections to Punitive and
Coercive Legal Approaches to
Maternal Decision Making
Maternal decision making, ethics, and the law. ACOG Committee
Opinion No. 321. ACOG. Obstet Gynecol 2005;106:1127-37.
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1. Coercive and punitive legal approaches to
pregnant women who refuse medical advice fail to
recognize that all competent adults are entitled to
informed consent and bodily integrity.
A fundamental tenet of contemporary medical
ethics is the requirement for informed consent,
including the right of competent adults to refuse
medical intervention.
In the United States, even in the case of two
completely separate individuals, constitutional
law and common law have historically
recognized the rights of all adults, pregnant or
not, to informed consent and bodily integrity,
regardless of the impact of that person’s
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decision on others.
2. Court-ordered interventions in cases of informed
refusal, as well as punishment of PG women for
their behavior that may put a fetus at risk, neglect
the fact that medical knowledge and predictions of
outcomes in obstetrics have limitations.
Women almost always are best situated to
understand the importance of risks and benefits
in the context of their own values,
circumstances, and concerns.
Fallibility – present to various degrees in all
medical encounters – is sufficiently high in
obstetric decision making to warrant wariness in
imposing legal coercion.
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3. Coercive and punitive policies treat medical
problems such as addiction and psychiatric illness
as if they were moral failings.
Although once considered a sign of moral
weakness, addiction is now, according to
evidence-based medicine, considered a disease
– a compulsive disorder requiring medical
attention.
Studies overwhelmingly show that pregnant drug
users are very concerned about the
consequences of their drug use for their fetuses
and are particularly eager to obtain treatment
once they find out they are pregnant.
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4. Coercive and punitive policies are potentially
counterproductive in that they are likely to
discourage prenatal care and successful
treatment, adversely affect infant mortality rates,
and undermine the physician-patient relationship
Various studies have suggested that attempts to
criminalize pregnant women’s behavior discourage
women from seeking prenatal care.
Threats and incarceration have been ineffective in
reducing the incidence of alcohol and drug abuse
among pregnant women, and removing children
from the home of an addicted mother may subject
them to worse risks in the foster care system.
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5. Coercive and punitive policies directed toward
pregnant women unjustly single out the most
vulnerable women.
Decisions about detection and management of
substance abuse in pregnancy are fraught with
bias, unfairly burdening the most vulnerable
despite the fact that addiction occurs
consistently across race and socioeconomic
status.
In the landmark case of Ferguson v City of
Charleston, which involved selective screening
and arrest of pregnant women who tested
positive for drugs, 29 of 30 women arrested
were African American.
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6. Coercive and punitive policies
create the potential for criminalization
of many types of otherwise legal
maternal behavior
Because many maternal behaviors are associated
with adverse pregnancy outcome, these policies
could result in a society in which simply being a
woman of reproductive potential could put an
individual at risk for criminal prosecution. (i.e.,
poorly controlled diabetes, periconceptional folic
acid deficiency, obesity, and prenatal exposure
to certain medications)
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What Can You Do?
• Know Local Policies, Laws
• Educate
– Self: Know risks, screening, tx options
– Families: Respectful Prevention Messages, Tx
– Society: Raise and discuss issues
•
•
•
•
Promote alcohol / drug screening
Avoid ‘just an occasional drink’ in PG
Recognize own biases
Listen, Empathize
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Information and Treatment
Resources
• Southeastern Regional FASD Training
Center
Tel: 615 327-5525 Web: www.sefasrtc.org
• NOFAS (National Organization on FAS)
Phone: 202-785-4585 Web:
www.nofas.org
• Local Alcohol and Drug Treatment
Resources: Web:
http://findtreatment.samhsa.gov/facilitylocato
rdoc.htm
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• CDC FAS Home Page at www.cdc.gov/fasd
Questions, Comments
??
Thank you!
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