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Child Advocacy Program
Art of Social Change:
Child Welfare, Education, & Juvenile Justice
Professor Elizabeth Bartholet
Administrative Director Cheryl Bratt
ASSIGNMENT PACKET for Session #2
February 5, 2015
Alcohol Use and Abuse During Pregnancy,
Its Impact, and Related Policy Issues
Ira Chasnoff, MD,
President, NTI Upstream, and
Professor of Clinical Pediatrics, University of Illinois College of Medicine
Morgan Fawcett, Founder and Spokesperson,
One Heart Creations
Session #2
February 5, 2015
Assignment
Speaker Biographies
Session Description
Readings:
Pages *
Elizabeth Bartholet
•
Bartholet, Nobody’s Children
NC 67-81, 207-32
Ira Chasnoff:
•
FASD Report and Resolution Approved by the ABA House
of Delegates, Aug. 7, 2002
1-10
•
Implementation of CAPTA as a Policy and Practice Tool to
Reduce the Impact of Prenatal Alcohol Exposure:
Points of Agreement
11-17
•
Ira Chasnoff, The Good Enough Syndrome, in The Mystery
of Risk: Drugs, Alcohol, Pregnancy, and the Vulnerable
Child (2010).
18-34
•
Ira Chasnoff, Alcohol, Pregnancy, and Racial and Social Class
Bias: How Racism and Classism Doom Prevention Efforts,
Psychology Today (Dec. 9, 2014)
35-37
•
Moment to Moment: Teens Growing Up with FASDs
(link available through iSites)
o This film, produced by Ira Chasnoff’s organization, NTI Upstream,
explores the lives of four adolescents with FASDs and the effects that
prenatal alcohol exposure has had and continues to have on them.
For class, please watch the first part of this video through minute
24:05. A full screening of the film will take place at HLS on
Wednesday, February 4, 2015, followed by a discussion with Dr. Chasnoff.
* NC refers to Nobody’s Children pages: all other page numbers refer to this
Assignment Packet
Session #2
February 5, 2015
Speaker Biographies
Ira Chasnoff, MD
Ira J. Chasnoff, M.D., an award-winning author, researcher and lecturer, is president of NTI
Upstream and a Professor of Clinical Pediatrics at the University of Illinois College of Medicine in
Chicago. He is one of the nation's leading researchers in the field of child development and the
effects of maternal alcohol and drug use on the newborn infant and child. His research projects
include a study of the long-term cognitive, behavioral and educational developmental effects of
prenatal exposure to alcohol, cocaine, and other drugs; strategies for screening pregnant
women for substance use; the effects on birth outcome of prenatal treatment and counseling
for pregnant drug abusers; the effectiveness of both outpatient and residential treatment
programs for pregnant drug abusers; and innovative treatment approaches for children affected
by prenatal exposure to alcohol or illicit drugs.
Dr. Chasnoff is part of the national effort to define the neurodevelopmental profile of children
across the fetal alcohol spectrum, working with various federal and state governmental
agencies, task forces, and committees. Dr. Chasnoff’s most recent work focuses on community
approaches to the integration of behavioral health services into primary health care for women
and children and the occurrence of co-occurring mental health disorders in children who have
been exposed to alcohol, methamphetamine, cocaine, and other drugs. As an extension of
these efforts, Dr. Chasnoff is working with communities and states to develop integrated
systems of prevention and care for children and families in the child welfare system affected by
substance abuse.
Dr. Chasnoff received his medical degree from the University of Texas Health Science Center at
San Antonio, which in 1991 awarded him its first Distinguished Alumnus Award. He is the
author of numerous books and articles on the effects of alcohol and other drug use on
pregnancy and on the long-term cognitive, behavioral, and learning outcomes of prenatally
exposed children. He is a regular contributor to Psychology Today and for several years has
been selected by a poll of physicians across the nation for listing in America’s Best Doctors. Dr.
Chasnoff has been active in establishing comprehensive family intervention programs for
children in Australia, Denmark, Portugal, Vietnam, the former Soviet Union, and across the
United States and has lectured on this topic around the world.
Morgan Fawcett
Morgan Fawcett is the Founder and Spokesperson of One Heart Creations, a not-for-profit
meant to increase awareness for Fetal Alcohol Spectrum Disorders (FASD). Morgan and his
grandparents began to raise awareness for FASD when he was 14 years of age and they’ve
travelled extensively over the years for these efforts. Morgan incorporates his Native American
flute playing into his programs to provide support for his message. He released three CDs
(Ancestral Memories, Tears of Our Fathers, and Legacy). Morgan was inducted into the NOFAS
Tom and Linda Daschle FASD Hall of Fame. He was selected as a Champion of Change for
President Obama’s Winning the Future Initiative and participated in a White House internship as
well as an internship with Senator Mark Begich.
Session #2
February 5, 2015
Session Description
Ira Chasnoff is the leading expert on Fetal Alcohol Spectrum Disorders (FASDs), and has been
centrally involved in efforts to develop laws and policies addressing the needs of children with
FASDs. He will describe the impact of alcohol on the developing fetal brain during pregnancy,
the needs of children and youth with FASDs, challenges they and their parents face, and related
policy issues. He will also discuss the film he helped create, Moment to Moment: Teens
Growing Up With FASDs, and the role it will play in his advocacy work. Morgan Fawcett will
share his personal story of living with FASD and discuss his efforts to organize and advocate for
youth affected by FASDs.
AMERICAN BAR ASSOCIATION
Co-Sponsors: ABA Commission on Youth at Risk, Criminal Justice Section, Commission on Disability Rights,
Commission on Homelessness and Poverty, Death Penalty Representation Project, Health Law Section,
Judicial Division, Alaska Bar Association, and the American Judicature Society
RESOLUTION APPROVED BY THE ABA HOUSE OF DELEGATES – AUGUST 7, 2012
RESOLUTION
RESOLVED, That the American Bar Association urges attorneys and judges, state, local, and specialty
bar associations, and law school clinical programs to help identify and respond effectively to Fetal
Alcohol Spectrum Disorders (FASD) in children and adults, through training to enhance awareness of
FASD and its impact on individuals in the child welfare, juvenile justice, and adult criminal justice
systems and the value of collaboration with medical, mental health, and disability experts.
FURTHER RESOLVED, That the American Bar Association urges the passage of laws, and adoption of
policies at all levels of government, that acknowledge and treat the effects of prenatal alcohol exposure
and better assist individuals with FASD.
REPORT
Introduction
Fetal Alcohol Spectrum Disorders (FASD) is a serious problem in the U.S., adversely affecting a very large
number of children and families, and in recognition of that the U.S. Senate has annually, since 2004, passed a
resolution designating September 9th as National Fetal Alcohol Spectrum Disorders Awareness Day. In 2011
Senate Resolution 2591 called upon the people of the United States to promote awareness of the effects of
prenatal exposure to alcohol, to increase compassion for individuals affected by prenatal exposure to alcohol, to
minimize the effects of prenatal exposure to alcohol to ensure healthier communities across the United States,
and to observe a moment of reflection during the ninth hour of September 9, 2011 to remember that during her
nine months of pregnancy a woman should not consume alcohol.
The Report provides background on FASD and discusses its impact on the justice system, the child welfare
system, and the disability benefits system. It also describes approaches to improving the various problems
identified in individuals with FASD who are in these systems. In addition, it highlights current initiatives that
are in place to benefit individuals with FASD.
The essential focus of this Resolution is to encourage: improvement in the civil, juvenile, and criminal legal
representation for persons with FASD; increased access to FASD expert screening and assessment; attention to
the over-abundance of FASD-affected persons in foster care, juvenile delinquency cases, adult criminal
proceedings, and correctional facilities; and the use of FASD knowledge in court for the mitigation of
sentencing and alternatives to incarceration and execution, including therapy and comprehensive services to
rehabilitate and reduce recidivism. Neither the Resolution nor this Report should be construed as suggesting
that use of alcohol during pregnancy is, or should be, a criminal act.
1
The language of the Senate Resolution includes these observations: “…fetal alcohol spectrum disorders are the leading cause of
cognitive disability in Western civilization, including the United States, and are 100 percent preventable…fetal alcohol spectrum
disorders are a major cause of numerous social disorders, including learning disabilities, school failure, juvenile delinquency,
homelessness, unemployment, mental illness, and crime”.
1
The ABA House of Delegates has not previously addressed the issue of FASD. FASD is a disability that cuts
across all age ranges, and it is a lifelong disability. There are unique concerns and problems facing children and
youth with FASD that need to be addressed. This includes the very large numbers of children with FASD in
both the foster care and juvenile justice system, as well as in the adult criminal justice system and correctional
institutions. The focus of the ABA Commission on Youth at Risk is on youth, and that is the reason for its
principal sponsorship of this Resolution. Given the unique nature of FASD, this Resolution, while addressing
and focusing on issues that impact children with FASD, also contains suggestions for actions that would benefit
adults with FASD.
This Resolution and its accompanying Report provides a road map, for legal professionals, lawmakers, and
those in government who deal with youth at risk, to increase awareness of FASD. It also encourages federal,
state, territorial, tribal, and local law and policy makers to implement laws and policies that reflect the serious
effects of prenatal alcohol exposure.
Types of Fetal Alcohol Spectrum Disorders
FASD is a group of conditions that can occur in individuals whose mother drank alcohol during pregnancy.2
FASD can result in birth defects, growth and development deficits, cognitive and learning issues, executive
functioning problems, difficulty remaining attentive, and problems socializing, as well as other behavioral
issues.3
The correlation between maternal alcohol consumption during pregnancy and deficits in physical and mental
development were first identified in the early 1970s.4 The first common symptoms identified among children
who had been prenatally exposed to alcohol were growth deficiencies and developmental delays.5 Shortly
thereafter Kenneth L. Jones, et al., found similar physical characteristics in these individuals.6 They included
similar patterns of craniofacial, cardiovascular, and limb defects.7
A follow-up study followed 11 children whose mothers drank heavily during pregnancy and found many
common features among this cohort.8 Among this small sample population, all children displayed growth
deficiencies (for height, weight, and head circumference), their abnormal craniofacial features had not changed
over the past decade, and they all had below-normal intellectual development.9 Most of these children had low
IQ scores and 8 were either mildly or severely handicapped.10
Since that time, several disorders related to fetal alcohol exposure have been identified. There are several types
of FASD, including Fetal Alcohol Syndrome (FAS), Partial FAS, Alcohol Related Neurodevelopmental
Disorders (ARND), and Alcohol Related Birth Defects (ARBD).11 These four diagnoses share certain
2
National Institute on Alcohol Abuse and Alcoholism, Alcohol Alert, Fetal Alcohol Spectrum Disorders: Understanding the Effects of
Prenatal Alcohol Exposure, No. 82. 3
Id. On March 29, 2012 U.S. Senators Johnson, Murkowski, Inoye, and Begich introduced S.2262, the Advancing FASD Research,
Prevention, and Services Act, that addresses many of the issues included in this Resolution and Report. 4
Kenneth L. Jones, David W. Smith, Christy N. Ulleland, & Ann Pytkowicz Streissguth, Pattern of Malformation in Offspring of
Chronic Alcoholic Mothers, THE LANCET, June 9, 1973, at 7815. 5
C. N. Ulleland, The Offspring of Alcoholic Mothers, 197 ANN. NY ACAD. SCI. 197 (1972). 6
Medically referred to as aberrant morphogenesis. 7
Jones et al., supra note 4. 8
Ann Pytkowicz Streissguth, Sterling Keith Clarren, & Kenneth Lyons Jones, Natural History of the Fetal Alcohol Syndrome: A 10Year Follow-up of Eleven Patients, THE LANCET, July 13, 1985, at 85. 9
Id. 10
Id. 11
National Institute on Alcohol Abuse and Alcoholism, supra note 2. 2
characteristics and fall within the broader category of FASD.12 All but ARBD involve significant brain
damage.
FAS is the most severe of the conditions that constitute FASD. An FAS diagnosis requires three specific
deficits:13 a characteristic pattern of facial abnormalities known as facial dysmorphology, such as a smooth
ridge between the nose and upper lip;14 growth deficits, such as lower than average weight and/or height;15 and
central nervous system abnormalities or brain damage.16 The latter may include a diagnosis of Attention Deficit
Disorder (ADD) or Attention Deficit Hyperactive Disorder (ADHD).17 While generally, individuals with FAS
tend to be the most impaired, with more severe physical and cognitive issues than individuals with other forms
of FASD,18 those with Partial FAS and ARND tend to show the most severe secondary disabilities.19 FAS
alone costs the United States approximately $5.4 billion each year in direct and indirect costs.20 It is also the
leading cause of non-genetic intellectual disability in the United States.21
Partial FAS includes some of the signs and symptoms of full FAS but not all.22 Individuals with Partial FAS
typically still present with physical and emotional deficits, but do not have all of the physical characteristics
listed in the FAS diagnostic guidelines. ARND includes central nervous system abnormalities and other
cognitive/behavioral problems, but none of the outward physical abnormalities.23 Individuals with partial FAS
and ARND present with cognitive issues that can be as severe as those seen in FAS. ARBD is a rarely-used
diagnosis that only identifies alcohol related physical abnormalities outside the central nervous systems (e.g.,
skeletal or organ abnormalities).24
The prevalence of full FAS and FASD has been examined in several studies. In one, the prevalence of full FAS
in the U.S. was estimated at 0.5-2.0 cases per 1000 births.25 The estimated rate of alcohol-affected births was
estimated to be 5 to 10 times higher, close to 1% of newborns.26 A more recent study reported the FAS
prevalence in the U.S. to be at least 2 to 7 cases per 1000 births, with all levels of FASD estimated as high as
2-5% among younger school children.27 There is currently an NIAA initiative to establish more accurate
estimates of FASD prevalence.
12
It is important to note that FASD is not a diagnosis; it is a broader category of related diagnoses. National Institute on Alcohol Abuse and Alcoholism, supra note 2. 14
Id. at 2. 15
Id. at 1. 16
Id. 17
Id. 18
Id. 19
Streissguth, A., Barr, H., Kogan, J., & Bookstein, F. (1966). Understanding the occurrence of secondary disabilities in clients with
fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Final Report: Centers for Disease Control and Prevention Grant No.
R04/CCR008515. 20
National Organization on Fetal Alcohol Syndrome, FASD: What Everyone Should Know,
http://www.nofas.org/MediaFiles/PDFs/factsheets/everyone.pdf. 21
National Institute on Alcohol and Abuse and Alcoholism, The 10th Special Report to the U.S. Congress on Alcohol and Health:
Prenatal Exposure to Alcohol, No. Publication No. 00-151583 (2000); Amy M. Schonfeld, Blari Paley, Fred Frankel, and Mary J.
O’Connor, Executive Functioning Predicts Social Skills Following Prenatal Alcohol Exposure, 12 CHILD NEUROPSYCHOLOGY 439
(2006). 22
National Institute on Alcohol Abuse and Alcoholism, supra note 2, at 1. 23
Id. 24
Id. 25
NIH Fact sheet; P.A. May & J. P. Gossage, Estimating the prevalence of Fetal Alcohol Syndrome: A Summary, 25 ALCOHOL
RESEARCH & HEALTH 159 (2001). 26
Diane V. Malbin, Fetal Alcohol Spectrum Disorder (FASD) and the Role of Family Court Judges in Improving Outcomes for
Children and Families, JUVENILE & FAM. CT. J. 52 (2004). 27
Philip A. May, J. Phillip Gossage, Wendy O. Kalbert, Luther K. Robinson, David Buckley, Melanie Manning, and H. Eugene
Hoyme, Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school
studies. Dev Disabil Res Revs, 15: 176-192 doi: 10; 1002/ddrr.68 (2009). 13
3
The intent of this Resolution is to spur development of programs for those living with FASD and their families.
This should especially include youth transitioning from foster care and juvenile justice systems, since those with
FASD are especially vulnerable to physical and sexual abuse. One study of over 400 individuals with FASD
found that 72% had been abused, either physically or sexually.28
Cause of FASD
FASD is caused by prenatal alcohol exposure. There is no safe amount of alcohol to drink during pregnancy,
and even small amounts of alcohol may have an impact on fetal brain development.29 A U.S. Surgeon
General’s 2005 advisory states that: pregnant women should not consume alcohol during pregnancy; pregnant
women who have already consumed alcohol while pregnant should stop to minimize risk; and women who are
considering becoming pregnant should not drink alcohol.30 In addition, former Surgeon General Carmona
recommended that health professionals routinely ask women of child bearing age about their alcohol
consumption and advise them not to drink during pregnancy, noting that this is of particular importance since
about half the births in the United States are unplanned.31 Many professional medical association guidelines
also indicate that women should not drink alcohol during pregnancy.32
Although any prenatal alcohol exposure presents a risk, there does seem to be a correlation between the amount
of alcohol a woman drinks during pregnancy and the likelihood her child will have FASD.33 Some women who
consume alcohol heavily during pregnancy do not have a child with FASD.34 However, typically, the more a
woman drinks during pregnancy, the higher the risk her child will have FASD and the more severe that child’s
symptoms will be.35
Diagnosis and Treatment
There are several diagnostic guidelines for FASD, each of which list characteristics required for a FAS, partial
FAS, ARND, or ARBD diagnosis. Despite these guidelines, there are still challenges to diagnosing individuals
with these disorders. It may be particularly difficult to diagnosis less severe cases of FASD. Individuals with
FASD do not always present with observable physical characteristics, making it more difficult to diagnose
them.36 In addition, one of the most helpful ways to diagnose FASD is when there is confirmed prenatal
alcohol exposure; however, mothers are often reluctant to admit they drank alcohol during pregnancy due to a
sense of guilt or shame.37
28
Ann Streissguth, Attaining Human Rights, Civil Rights, and Criminal Justice for People with Fetal Alcohol Syndrome, TASH
NEWSLETTER, September 1998, at 18. 29
U.S. Surgeon General, Surgeon General’s Advisory on Alcohol and Pregnancy, 2005, available at
http://www.surgeongeneral.gov/pressreleases/sg02222005.html; Claire Coles, Discriminating the Effects of Prenatal Alcohol
Exposure From Other Behavioral and Learning Disorders, 34 ALCOHOL RESEARCH AND HEALTH 42 (2011). 30
U.S. Surgeon General, Surgeon General’s Advisory on Alcohol and Pregnancy, 2005, available at
http://www.surgeongeneral.gov/pressreleases/sg02222005.html. 31
Id. 32
See e.g., American College of Obstetricians and Gynecologists. 33
Susan E. Maier & James R. West, Patterns and Alcohol-Related Birth Defects, National Institute on Alcohol Abuse and
Alcoholism, available at http://pubs.niaaa.nih.gov/publications/arh25-3/168-174.htm. 34
This may be due to a number of factors including, but not limited to, genetic susceptibility, maternal metabolism, drinking patterns, 35
Maier, supra note 33. 36
Malbin, supra note 26. 37
Kenneth Lyons Jones & Ann P. Streissguth, Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders, 38 J. PSYCH & L. 373
(2010). 4
Individuals with FASD may have IQs that are in the average range and appear to have good verbal skills,
making it more difficult to recognize FASD.38 Although these individuals may not have obvious symptoms or
characteristics, they typically exhibit adaptive behavior and other deficits that make it difficult for them to
function at an age appropriate level.39
There is no cure for FASD, and the deficits associated with these disorders follow children into adulthood.40
That being said, early intervention and treatment services may improve a child’s development. Strategies
include medication for some symptoms, behavioral and educational therapies, special education, social services,
and the support of a nurturing and loving environment.41 These interventions are most effective when a child is
diagnosed before age 6.42 Children with FASD who were involved in intervention programs to improve social
skills showed improvements in both knowledge and behavior.43
It is critical that comprehensive resources be allocated for early identification, diagnosis, intervention, and
treatment for those with FASD. Given the array of problems individuals with FASD face, and the importance
of early intervention, it is vital that professionals become aware of the issue so that appropriate services can be
provided.
Impact on the Justice System
Children with FASD are at high risk of getting into trouble with law. One study looked at FASD in alleged
juvenile offenders in British Columbia, Canada during 1995. All youth from the juvenile court who were sent
to the Inpatient Assessment Unit for purposes of a psychological and psychiatric study were also assessed for
what was then called FAS/FAE and is now called FASD. Of the 287 youth seen over a year's time, 23.3 % had
an alcohol-related diagnosis (FASD). The authors also found, among youth in juvenile facilities, an astounding
40 times the expected rate of individuals with FASD.44
Individuals with FASD have executive functioning issues that result in difficulties socializing with peers,
sharing, and managing conflicts.45 This can result in rejection, which leads to a higher probability of
individuals with FASD associating with other rejected children and a higher probability that they will be
involved in delinquent behaviors and have problems with the law.46
A large study at the University of Washington found that about 60% of individuals with FASD had a history of
trouble with the law and 50% had a history of confinement in a jail, prison, residential drug treatment facility, or
38
Natalie Novick Brown, Anthony P. Wartnik, Paul D. Connor, and Richard S. Adler, A Proposed Model Standard for Forensic
Assessment of Fetal Alcohol Spectrum Disorders, 38 J. OF PSYCH. & L. 383, 387 (2010).
39
Kathryn Page, The Invisible Havoc of Prenatal Alcohol Damage, J. CENTER FOR FAM. CHILD. & CTS. 1, 10-11 (2002). 40
Blair Paley and Mary J. O’Connor, Neurocognitive and Neurobehavioral Impairments in Individuals with Fetal Alcohol Spectrum
Disorders: Recognition and Assessment, 6 INT’L J. DISABIL. HUM. DEV. 127, 130 (2007). 41
Id. 42
Id. 43
Mary O’Connor et al., A Controlled Social Skills Training for Children with Fetal Alcohol Spectrum Disorders, 74 J. CONSULTING
& CLINICAL PSYCH. 639, 646 (2006).
44
Malbin, supra note 26, citing Julianne Conry and Diane K. Fast, Fetal Alcohol Syndrome and Criminal Justice, BC: Fetal Alcohol
Syndrome Resource Society (2000); see also, Diane K. Fast, Julianne Conry, and Christine A. Loock, Identifying Fetal Alcohol
Syndrome Among Youth in the Criminal Justice System, Developmental and Behavioral Pediatrics, v. 20(5), October 1999. 45
Schonfeld, et al., supra note 21, at 450. 46
Id. 5
psychiatric hospital.47 The average age children with FASD begin having trouble with the law is 12.8 years.48
This may be in part due to the fact that children with FASD are easily led by others and tend to be impulsive.49
Individuals with FASD have various characteristics that put them at a greater risk of ending up in the criminal
justice system. For example, as was mentioned, they are typically impulsive and have difficulty predicting the
consequences of their actions.50
In addition, given their executive functioning problems, these individuals may not always have the legal
capacity to commit deliberate/intentional crimes.51 Given these characteristics:
…[i]n the criminal context, FASD-associated problems in reflection, forming intent, and carrying out
effective goal-directed behavior are directly relevant to mental state…their behavior often breaks down or
decomposes in novel high-stress situations…This decomposition often leads to instinctive fight or flight
reaction…neglecting previous learning experiences, consequences, and impact on themselves and others.52
Several issues surrounding individuals with FASD in the justice system include competency to stand trial,
validity of expert testimony,53 and mitigation during sentencing.54 Individuals with FASD may not understand
charges.55 Since individuals with FASD cannot always form the requisite intent required for certain crimes and
do not fully understand the consequences of their actions, defendants with FASD may face diminished capacity
issues.
In Dillbeck v. State, the court held that FASD should be considered in the guilt/innocence phase of the trial as
well as in sentencing, noting that:
… Evidence concerning certain alcohol-related conditions has long been admissible during the guilt
phase of criminal proceedings to show lack of intent … then so too should evidence of other commonly
understood conditions that are beyond one’s control … [w]e perceive no significant legal distinction between
the condition of epilepsy… and that of alcohol-related brain damage in issue here – both are specific,
commonly recognized conditions that are beyond one’s control.56
This is significant because the court recognized the benefits of considering FASD during both the trial phase
and during sentencing.
Confirming a diagnosis of FASD may be critical in designing a sentence or sentencing alternative that will be
effective in reducing the risk of recidivism and will avoid causing far greater harm to a defendant with FASD
than to a defendant without this disability. Because of their impairments, individuals with FASD, when
confined in a jail or prison, can be more vulnerable than those who are not disabled to physical and sexual
abuse, and consequently more adversely affected than others.57
47
Natalie Novick Brown, Anthony P. Wartnik, Paul D. Connor, and Richard S. Adler, A Proposed Model Standard for Forensic
Assessment of Fetal Alcohol Spectrum Disorders, 38 J. OF PSYCH. & L. 383, 384 (2010).
48
Id.
49
Natalie Novick Brown, Gisli Gudjonsson, & Paul D. Connor, Suggestibility and Fetal Alcohol Spectrum Disorders: I’ll Tell You
Anything You Want to Hear, 39 J. OF PSYCH. & L. 39 (2011). 50
Substance Abuse and Mental Health Services Administration: A Fetal Alcohol Spectrum Disorders Center for Excellence. What You
Need To Know: Fetal Alcohol Spectrum Disorders and Juvenile Justice: How Professionals Can Make a Difference. DHHS Pub. No.
(SMA)-06-4240 (Rockville, MD: 2007). 51
Brown, et al., supra note 49. 52
Brown et al., supra note 47. 53
See State v. Brett, 126 Wash. 2d 136, 892 P.2d 29 (1995); Castro v. State of Oklahoma, 71 F.3d 1502 (10th Cir. 1995) (discussing
who can determine a whether an individual has FASD when it in unknown if the mother drank alcohol during pregnancy). 54
U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services, Fetal Alcohol Spectrum Disorders
and the Criminal Justice System, available at www.samhsa.gov.
55
See Dunn v. Johnson, 162 F.3d 302 (5th Cir. 1998); People v. Flemming, 2003 WL 21675890 (Mich. App.); State v. Lee, 220 Wis.
2d 716, 583 N.W. 2d 674 (Ct. App. Wisc. 1998). 56
Dillbeck v. State, 643 So. 2d 1027 (Fla.). 57
Kathryn A. Kelly, “Fetal Alcohol Spectrum Disorders and the Law,” in Prenatal Alcohol Use and FASD: Diagnosis, Assessment
and New Directions in Research and Multimodal Treatment (Susan A. Adubato and Deborah E. Cohen, eds), 2011. 6
In recent years, FASD has been offered as a mitigating factor during sentencing; there are many death penalty
cases in which the defendant’s history suggests FASD and a diagnosis of FASD has been persuasive to juries as
an explanation for otherwise inexplicable behavior. Also, in Atkins v. Virginia, the U.S. Supreme Court held
that executing an individual with an intellectual disability violates the Eighth Amendment.
In some cases this will exclude the defendant with FASD from eligibility for the death penalty. However, if an
I.Q. score of 70 or below, as many states define intellectual disability, is what disqualifies a defendant from the
death penalty then most of those with FASD, because of their typically higher scores, would not be covered by
Atkins.58
Children and adults with FASD are becoming involved in the justice system at an alarming rate. The unique
characteristics of these individuals warrant additional attention.59 This Resolution encourages increased
awareness of FASD among attorneys, judges, other court professionals, and court appointed advocates.
These individuals are urged to utilize existing screening tools to identify clients with FASD.
Attorneys, judges, bar associations and law school clinical programs, as well as all other persons and entities
involved with youth at risk, juvenile justice, or adult criminal court, should also support training and develop
enhanced awareness and understanding of FASD. This can be accomplished by collaborating with medical,
mental health, and disability experts on training to enhance representation for individuals with FASD. Current
initiatives that strive to achieve such successes are discussed later in this Report and can be used as potential
models.
Courts should also be considering FASD disability as a factor in mitigation with juvenile and adult offenders
during sentencing, particularly where the death penalty is an option. This mitigating factor should also be
applied when considering alternatives to incarceration, including therapy, community-based programs, and
other non-custodial measures, in order to rehabilitate the individual and reduce recidivism.
Impact on the Child Welfare System
A large study of over 400 individuals with FASD, ranging from age 6-51, resulted in various concerns about
human rights, civil rights, and criminal justice system involvement for individuals with FASD.60 An astounding
80% of children in that study had not been primarily raised by a biological parent.61 In addition, 12% of
children and 60% of adolescents experienced significant school disruptions.62 This statistic is especially
disturbing since children with FASD already face heightened academic challenges based on several of the
mental and behavioral characteristics associated with FASD. It is clear that children with FASD are part of the
“at-risk” population and should have access to special programs and services.
There are a disproportionate number of children with FASD in the foster care system; the rate of FAS in the
foster care system is 10-15 times higher than in the general population.63 In the United States, an estimated
70% of children in foster care are affected by some type of prenatal alcohol exposure.64 This is particularly
58
Atkins v. Virginia, 536 U.S. 304 (2002). Timothy E. Moore & Melvyn Green, Fetal Alcohol Spectrum Disorder (FASD): A Need for Closer Examination by the Criminal
Justice System, 19 CRIM. REPORTS 99 (2004).
60
Ann Streissguth, Attaining Human Rights, Civil Rights, and Criminal Justice for People with Fetal Alcohol Syndrome, TASH
NEWSLETTER, September 1998, at 18. 61
Id. 62
Id. 63
SJ Astley, J Stachowiak, SK Clarren, & C Clausen, Application of the fetal alcohol syndrome facial photographic Screening Tool in
a Foster Care Population, 141 J. Pediatrics 712 (2002).
64
The National Organization on Fetal Alcohol Syndrome, FASD in the Foster Care System,
http://adp.ca.gov/women/pdf/FASD_in_the_Foster_Care_System.pdf 59
7
worrisome because children with FASD benefit from having a stable environment, a comfort that is,
unfortunately, not available for many children in foster care.
Children in foster care are already at high risk for educational disruptions as well as behavioral and
developmental issues. This is exacerbated when that child has FASD. It would be beneficial to provide training
and education to foster parents on how to identify the behaviors associated with FASD, how to seek a diagnosis
of the disability, and how to appropriately respond to characteristics and behaviors associated with FASD. This
training could provide foster parents with information about services and programs available for children with
FASD.
Full implementation is also necessary for a provision of the federal Child Abuse Prevention and Treatment Act65
that was intended to provide for more effective screening and referral processes for individuals with FASD, in
recognition of the importance of addressing the over-abundance of children with FASD in the child welfare
system. Fully implementing that Act’s existing mandate of screening and referral processes for children with
FASD can help assure their early identification and hopefully prompt access to successful treatment.
Impact on Disability Benefits
Individuals with disabilities may be eligible for medical and cash benefits, such as Social Security Disability,
based on their disability. Children and adults with FASD may be eligible for such benefits, but a diagnosis of
FASD does not create an automatic entitlement66 and they will be required to meet statutory criteria, and
establish that such impairment exists.67 In some cases, individuals will be required to prove that FASD severely
limits their work activities, which may not be the case for many individuals with FASD.68
Individuals with FAS or more severe FASD symptoms will have an easier time proving they are eligible for
benefits. That being said, even individuals with severe cases of FAS may face difficulties establishing their
eligibility because the system is complex and often difficult to navigate.69 Also, state law and policy may not
list FASD related impairments within their definitions of “developmental disabilities.”70 Individuals who seek
attorney representation may have an easier time establishing eligibility and gaining access to disability benefits
that will improve their quality of life.
It is important that FASD, alcohol-related neurological disorders, alcohol-related birth defects, and the effects
of fetal alcohol exposure generally, be included within statutory definitions of developmental disabilities and
listing of conditions that provide medical and other benefit coverage for screening, diagnosis, and treatment for
those with these conditions. Law and policy makers should ensure that individuals with FASD are eligible for
disability benefits and appropriate medical services. Eligibility and utilization of these benefits and services
will help improve the lives of individuals with FASD, especially youth and those transitioning out of the foster
care or juvenile justice system.
65
42 U.S.C. 5106a (b)(2)(B). Amy Gilbrough, Eligibility for Social Security Benefits: Fetal Alcohol Spectrum Disorders, in Alcohol Related Birth Disorders and
the Law: How Should Attorneys & Judges Respond to FASD?, Continuing Legal Education Materials (Feb. 3, 2012). 67
Id. 68
Id. 69
Id. 70
One state law that does include FASD as a “related condition” within the definition of developmental disabilities is Minnesota
Statutes §252.27. 66
8
Current Initiatives
There are many beneficial programs and initiatives in the United States focusing on increasing awareness of
FASD among legal professionals, identifying individuals with FASD in the justice system, and ensuring that
these individuals receive appropriate and necessary services. This section highlights two of these initiatives.
Seventeenth Judicial District Juvenile Court FASD Project
The Juvenile Court of Colorado’s 17th Judicial District’s FASD Project is working to increase awareness of
FASD among judicial officers, attorneys, and court appointed advocates and use referrals as an effective tool for
children in the child welfare system.71 The FASD Project screens children in the Juvenile Delinquency and
Child Welfare Courts of Adams and Broomfield Counties for prenatal substance exposure.72 By integrating
FASD screening, diagnosis, and intervention within the court system, the FASD Project is working to improve
the lives of children and youth with FASD.
The FASD Project’s key strategies are:
• To integrate FASD screening into Juvenile Court;
• To refer children to a diagnostic center for evaluation and a possible diagnosis;
• To meet with key players in the child’s life, including parents, case workers, and probation officers, to
develop individualized case plans for children with FASD; and
• To track data and monitor the success of this project.
The FASD project is so important because “it is identifying, supporting and tracking outcomes for children and
youths who would otherwise have a high likelihood of failing in school, experiencing multiple placements, and
re-offending or violating probation.”73 This project provides the necessary care for children with FASD while
increasing awareness among professionals who work with these individuals to ensure that the appropriate care
and services are provided.
Alaska FASD Partnership
The Alaska FASD Partnership is a statewide coalition of over 75 organizations and individuals working to
prevent FASD and improve access to services for individuals with FASD. The mission of the partnership is
“[t]o promote awareness, prevention, and effective life-long interventions for those affected by prenatal
exposure to alcohol and their families.”74 Through seven workgroups, the partnership has been able to identify
gaps and barriers to services for individuals with FASD.75 The workgroups develop policy and funding
recommendations and strive to increase awareness about this issue.
In 2010, the partnership’s first year, they were integral in establishing state funding for substance abuse
treatment programs for pregnant women, parent navigation services, and greater access to services for
individuals with FASD.76 The workgroups are currently addressing several important issues, including
prevention of FASD, diagnosis and access to services, the impact of FASD in the legal and education systems,
and professional development.77 Identifying these issues and establishing best practices will ensure better
services and care for individuals with FASD.
71
Seventeenth Judicial District Juvenile Court FASD Project, Project Summary,
http://www.fasdcenter.com/files/17thJudicialDistrictColorado-Article.pdf. 72
Id. 73
Id. 74
Advisory Board on Alcoholism and Drug Abuse, Alaska FASD Partnership, http://www.hss.state.ak.us/abada/fasd.htm. 75
Id. 76
Id.
77
Id. 9
The Seventeenth Judicial District FASD Project and the Alaska FASD Partnership are two initiatives that
exemplify meaningful work being done around the country to serve individuals with FASD. As highlighted by
this Report, legal professionals and individuals involved with youth at risk should be supporting training and
awareness of FASD. In addition, lawmakers should be addressing various issues surrounding FASD to ensure
that individuals with FASD have access to appropriate services and are treated fairly.
Conclusion
Given the alarming data, and the unique characteristics of individuals with FASD, there is a clear need for
increased awareness of FASD. Attorneys, judges, bar associations, law schools, and other entities involved
with at-risk youth, juvenile justice, and the adult criminal court should support training and awareness of FASD.
These individuals should collaborate with medical, mental health and FASD disability experts to promote
appropriate legal representation and advocacy for individuals with FASD and to address the over-abundance of
individuals with FASD in the foster care system, the juvenile justice system and the adult criminal court.78
In addition, courts should use FASD as a mitigating factor for juveniles and adults during criminal sentencing.
Federal, state and local law and policy makers should also enact laws and policies that reflect the serious effects
of prenatal alcohol use. It is vital to increase public awareness, especially for women who are substance
abusers, pregnant, or of childbearing age, about FASD to both prevent it’s occurrence and to ensure that
individuals with FASD, and specifically children and youth with FASD, have access to appropriate services
and, if they are involved in the courts, skilled legal representation.
78
In August 2010 the Council of the Canadian Bar Association approved resolution 10-02-A, which called for the “initiative of
Federal, Provincial and Territorial Ministers responsible for Justice with respect to access to justice for people with FASD,” urged “all
levels of government to allocate additional resources for alternatives to the current practice of criminalizing individuals with FASD,”
urged “federal, territorial and provincial governments to develop policies designed to assist and enhance the lives of those with FASD
and to prevent persistent over-representation of FASD affected individuals in the criminal justice system,” and urged “the federal
government to amend criminal sentencing laws to accommodate the disability of those with FASD.” 10
Implementation of CAPTA as a Policy and Practice Tool
to Reduce the Impact of Prenatal Alcohol Exposure:
Points of Agreement
On August 1-2, 2011, a group of representatives of national organizations concerned with
children affected by prenatal exposure to alcohol and illicit drugs met in Chicago to develop a
statement focusing on the implementation of the Child Abuse Prevention and Treatment Act
(CAPTA), as amended in 2010. The provisions of CAPTA with which the group was most
concerned were (1) the referral of drug or alcohol-affected newborns to child welfare agencies,
with alcohol exposure and a reference to Fetal Alcohol Spectrum Disorders (FASD) included for
the first time, and (2) the referral of children 0-2 in a substantiated child welfare case to a Part C
early intervention agency for developmental screening.
The group’s discussion of CAPTA and FASD issues took place in the context of a much wider
concern for prenatal substance exposure, which was the basis for the original CAPTA legislation
in 2004. The group emphasized that FASD is not a diagnostic term, but a broad description of a
range of effects due to prenatal exposure to alcohol. The ten principles that follow represent the
points of agreement in the discussions among the representatives attending the meeting. Guiding
the development of these principles is our unanimous agreement that substance use in pregnancy
is a public health issue. We strongly oppose referrals to the criminal justice system rather than to
appropriate treatment. We also oppose targeted screening with toxicological testing at birth,
which can be subject to bias and can trigger punitive responses in some states and localities.
These approaches make it more difficult to get pregnant and parenting women the treatment they
need and affects the ability to access early intervention services for their children.
The statement does not represent the official positions of any of the participants’ organizations; it
is the intent of the group to circulate this document among their organizations and several others
that work in this field. The representatives who met in Chicago in August fully recognize there is
a diversity of perspectives on the issues of prenatal exposure, prenatal screening, and other issues
touched on in this document, and the group seeks wide review and consideration of these
thoughts.
Two additional points were also underscored during the discussions:
• the major challenges facing state and local governments in considering how to respond to
an issue such as CAPTA in the midst of great fiscal uncertainty and
• the challenges facing federal agencies in playing their needed oversight role with limited
resources and multiple demands.
11
The Principles
1.
States currently are inconsistent and uneven in their implementation of the CAPTA
provision to refer substance-exposed newborns to child protective services (CPS) for
prenatal exposure to alcohol. Likewise there is inconsistency in the referral of
substantiated 0-2 cases, many of which involve infants and toddlers affected by prenatal
alcohol exposure, from CPS to Part C agencies. We believe that this is a missed
opportunity to give needed attention to FASD issues as intended by Congress in the 2010
amendments.
Recommended Action: We urge HHS (including SAMHSA, MCHB, ACF and
others) and the US Department of Education to work together to provide financial
incentives and formal guidance in the form of a Program Instruction to states to
enhance effective implementation of these requirements, including development of a
model for the Plan of Safe Care that states are required by the CAPTA legislation to
develop in every referred case.i
2. Congress has required that states track and enumerate prenatal exposure and
developmental screening in response to prenatal exposure. Most states do not identify,
collect, or report adequate data on prenatal exposure and referrals to and enrollment in
early intervention programs for prenatally exposed infants and younger children.
Recommended Action: We recommend that HHS and the US Department of
Education provide financial incentives to states to improve data collection, child
outcomes, and the rate of cases receiving appropriate referrals.
3. HHS, through HRSA and ACF, must assure that use of the term FASD, as referenced in
the CAPTA amendments of 2010, is clarified to health providers and staff in relevant
agencies in all states.
Recommended Action: We recommend that states, using the most advanced
strategies and guidelines for defining the diagnostic components within FASD,
should incorporate existing knowledge into state practice and communicate with
all relevant clinicians, hospitals, and other providers of care to children birth to
two years.
4. Knowledge of FASD, its identification and strategies for treatment are lacking among
health, early learning, family and child welfare professionals who come into contact with
children who have been affected by prenatal alcohol exposure.
Recommended Action: We recommend that states provide evidence-based
trainingi to personnel across multiple domains, agencies, and disciplines to
educate them on issues related to prenatal alcohol exposure and the diagnosis of
fetal alcohol syndrome and the broad spectrum of associated disorders that fall
within FASD. Recognizing that there are no guidelines for diagnosing Alcohol
Related Neurodevelopmental Disorder (ARND) within the newborn or early
infancy period, we urge the development of such guidelines.
12
5. A wide range of disciplines and professions are involved in the care and oversight of
children affected by prenatal exposure to alcohol and illicit drugs.
Recommended Action: We urge that Title IV-E-supported training for judges,
attorneys, and court staff, as well as CPS staff, foster and adoptive parents, and
others included under the federal Fostering Connections Act training provisions
should address issues related to FASD. Reflecting the recent amendment to
CAPTA requiring the training of attorneys for children, guardians ad litem, and
Court Appointed Special Advocates on early childhood development, we urge
that such training also include content on FASD.
HHS should encourage, in new applications under the Regional Partnership
Grants to Assist Children Affected by Parental Substance Abuse that were
reauthorized in the 2011 reauthorization of the Promoting Safe and Stable
Families Program, the use of multidisciplinary approaches to addressing FASD.
6. Within the context of the 2010 CAPTA legislation, screening newborns and infants for
prenatal exposure to drugs and alcohol should not be defined as a single event using a
single tool, but as a continuing process that includes prenatal screening of the mother
accomplished through the use of standardized and validated screening instruments, not
through toxicological testing at delivery.ii
Recommended Action: Following birth, we urge developmentally appropriate
screening of all newborns, infants and young children. This screening should take
place as a component of primary care, ideally as part of a medical home. For
infants and children in foster care, this should be consistent with the Fostering
Connection’s Act’s promotion of the medical home concept. Such screening
should also be coordinated with other screening requirements, including EPSDT
and Early Head Start.
7. Extensive research has documented the benefit of prenatal screening, brief interventions,
and family-based treatment in reducing the effects of prenatal substance exposure.
Recommended Action: The Children’s Bureau and HRSA should issue a joint
announcement to states regarding the importance of prenatal screening coupled
with brief intervention strategies and longer term family-based treatment as
needed to reduce the harms associated with prenatal substance use.
Recommended Action: We urge states to implement policies, including full
utilization of Medicaid reimbursement, that ensure pregnant women receive
information about the harm of alcohol use in pregnancy and that provide for
universal screening of pregnant women utilizing evidence-based instruments and
priority access to substance abuse treatment for pregnant and parenting women.
Insurance carriers should be urged to include prenatal substance use education
and counseling as a covered benefit in all prenatal packages
13
8. There are insufficient data that document the cost effectiveness of screening, brief
intervention, and treatment that are linked to primary prenatal care.
Recommended Action: Additional research should be supported by HHS that
will increase evidence of the cost savings across systems that result from
evidence-based early identification and early intervention for infants affected by
prenatal substance exposure.
9. There are several other major policy and practice issues that require attention and
revision that would support CAPTA’s provisions regarding prenatal substance exposure:
Recommended Action: Federal agencies are urged to address these issues-A. The impact of the Affordable Care Act as it relates to the prevention of
substance use in pregnancy; maternal substance abuse screening, diagnosis,
and treatment availability; and enhancing access to services for their infants
through early identification and diagnosis
B. Incorporation of substance use screening and intervention within the Maternal,
Infant, and Early Childhood Home Visiting Program
C. Role of state Early Childhood Advisory Councils (required under the Head
Start reauthorization) in recognizing and addressing the impact of prenatal
substance exposure on children served by federally supported early childhood
programs
D. Utilization of prospective new waivers under Title IV-E to promote FASD
diagnosis and early intervention and access to family treatment
E. Examination of the barriers under the Health Insurance Portability and
Accountability Act of 1996 (HIPAA) – real and misperceived – that inhibit
information sharing related to prenatal substance exposure interventions; this
information should be clearly explained and available to all providers
F. Modification of the Child and Family Services Review (CFSR) process to
measure state compliance with the CAPTA provisions related to identification
and referral of substance-exposed infants and children
G. Encouragement of states, and HHS, to support new Child Welfare
Demonstration Projects pursuant to the Child and Family Services
Improvement and Innovation Act of 2011 that will address services to
children with FASD.
H. Modification of eligibility requirements for IDEA Part C and Part B to
encompass children at risk for school failure due to prenatal substance
exposure.
14
Supporting Information
CAPTA language as amended in 2010
State Plans shall contain assurances that there is a state law or statewide program that includes:
***
“(b)(2)(A)(ii) policies and procedures (including appropriate referrals to child protection service
systems and for other appropriate services) to address the needs of infants born with and
identified as being affected by illegal substance abuse or withdrawal symptoms resulting from
prenatal drug exposure, or a Fetal Alcohol Spectrum Disorder, including a requirement that
health care providers involved in the delivery or care of such infants notify the child protective
services system of the occurrence of such condition in such infants, except that such notification
shall not be construed to—
(I) establish a definition under Federal law of what constitutes child abuse or neglect; or
(II) require prosecution for any illegal action.
(iii) the development of a plan of safe care for the infant born and identified as being affected by
illegal substance abuse or withdrawal symptoms, or a Fetal Alcohol Spectrum Disorder”
Annual state data reports—new language added in 2010 CAPTA amendments
‘‘(16) The number of children determined to be eligible for referral, and the number of children
referred, under subsection (b)(2)(B)(xxi), to agencies providing early intervention services under
part C of the Individuals with Disabilities Education Act (20 U.S.C. 1431 et seq.).’’
------------------------------i
ACOG emphasizes that any alcohol use during pregnancy or the infrequent use of controlled substances early in
pregnancy is subject to reporting to authorities during pregnancy or at birth. In their view, this reporting will quickly
result in non-disclosure to the provider by pregnant women, who will then miss the education and counseling they
require. ACOG further emphasizes that most pregnant women who use alcohol and THC are not dependent and do
respond to provider intervention.
In response, members of the group noted that there is no safe level of alcohol use in pregnancy and that there is wide
agreement that referrals should be the basis for supportive services and intervention, and not formal reporting of
maltreatment, as the CAPTA legislation makes clear that what should be made is a referral or “notification” for
development of a plan of safe care with the delivery of services, and not a report of abuse or neglect.
ii
ACOG notes that the AAP is developing a comprehensive tool kit for child health providers to guide in the
recognition and assessment of FASD. This is a CDC funded project. Contact point is Faiza Khan- [email protected].
ACOG adds: “We agree that the use of a validated maternal screening instrument and not toxicology is important,
however if toxicology is used, we urge that maternal consent, or at least assent, is obtained. The mother needs to
understand how this screening will be used.”
15
Participants in the Chicago CAPTA meeting
iii
iv
Michele Lorand
American Academy of Pediatrics
Division of Child Protective Services
John H. Stroger Jr. Hospital of Cook County
Administration Building, 11th Floor
1900 W. Polk Street
Chicago, IL 60612
[email protected]
Ira J. Chasnoff, MD
NTI Upstream
1055 W Bryn Mawr, Suite F-267
Chicago, IL 60660
[email protected]
Sid Gardner
Children and Family Futures
4940 Irvine Blvd. Suite 202
Irvine, CA 92620
[email protected]
Evelyn Shaw
Part C agencies
Campus Box 8040, UNC-CH
Chapel Hill, NC 27599-8040
[email protected]
Linda Carpenter
Children and Family Futures
644 Scandia Pkwy
Camino Island, Washington 98282
[email protected]
Jan Kasofky
Capital Area Human Services District
4615 Government Street, Bldg. 2
Baton Rouge, LA 70806
[email protected]
Lucy Hudson
Zero to Three Court Teams for
Maltreated Infants and Toddlers
1255 23rd Street, NW, Suite 350
Washington, DC 20037
[email protected]
Patricia R. Wilson, Commissioner
Department for Community Based Services
Cabinet for Health and Family Services
275 East Main St. 3W-A
Frankfort, KY 40621
[email protected]
Jeanne Pietrzack
National Abandoned Infants Assistance
Resource Center
University of California, Berkeley
1950 Addison Street, Suite 104# 7402
Berkeley, CA 94720-7402
[email protected]
Christine Calpin
Casey Family Programs
2001 Pennsylvania Ave., NW Suite 760
Washington, DC 20006
[email protected]
Howard A. Davidson, J.D., Director
ABA Center on Children and the Law
740 15th Street, N.W.
Washington, DC 20005
[email protected]
Mary Bissell
Child Focus Partners
821 Rowen Road
Silver Spring, MD 20910
[email protected]
Jeanne Mahoney, Dir. Substance Abuse Issues
Amer. Coll. of Obstetricians & Gynecologists
PO Box 96920
Washington, DC 20090-6920
[email protected]
Ann Honebrink, MD
Penn Health for Women
250 King of Prussia Rd
Radnor, PA 19087-5220
(610)902-2500
[email protected]
16
Christine Calpin
Casey Family Programs
2001 Pennsylvania Ave, NW Suite 760
Washington, DC 20006
[email protected]
Mary Bissell
Child Focus Partners
821 Rowen Road
Silver Spring, MD 20910
Ann Honebrink, MD
Penn Health for Women
250 King of Prussia Rd.
Radnor, PA 19087-5220
[email protected]
Carole Hurley, Esq.
8720 Silverhill Lane
Austin, Texas 78759
Rasa M. Ragas, MSW, LSW
National Association of Perinatal Social Workers
[email protected]
[email protected]
Kathryn Kelly, Project Director
FAS/E Legal Issues Resource Center
Fetal Alcohol and Drug Unit
180 Nickerson Street, Suite 309
Seattle, WA 98109
206-543-7155
[email protected]
iii
The listing of these individuals who participated in
the development of this document should not be
construed as representing and official endorsement
by their organization
iv
For further information, please contact Dr. Ira
Chasnoff
17
©
Ira J. Chasnoff, MD
from: The Mystery of Risk
Published by NTI Upstream, 2010
Chapter 13
The GoodEnough Syndrome
Stand ten feet away from a wall. Now walk halfway to the wall
and stop. Continue in this manner, walking half the distance
each time you move forward. As you advance you’ll see the
wall coming closer, you may even be able to touch it. But you’ll
never make it all the way to the wall.1
This dilemma is a good illustration of what I have come to call the GoodEnough
Syndrome: a mindset of moving forward inch by inch without ever making progress, a
pattern of thinking that sedates like an opiate, convincing us that going half-way is “good
enough.” In this sense, the GoodEnough Syndrome is characterized by policies and
practices that use the lowest common denominator of achievement to define success –
usually financial or political success rather than human success.
The truth is we are falling short. The
GoodEnough Syndrome’s failure to improve
the lives of children occurs for many reasons,
but above all it comes from a lack of
conviction. When it is time to sit down and
discuss policy, lawmakers are willing to
acquiesce for the sake of diplomacy and
compromise. This social phenomenon was
explained in 1974 by Jerry Harvey, the
professor emeritus of management science at
George
Washington
University,
as
the
Abilene Paradox. It occurs in organizations in
which agreement is reached and action is
TABLE 13.1
Policies and practices of the GoodEnough
Syndrome
• are reactive rather than proactive;
• are grounded in terms of financial rather than
human cost;
• focus on singular problems or diagnoses rather
than co-occurring disorders;
• determine service access based on eligibility
rather than need;
• restrict range, intensity, and duration of
services;
• define success in terms of broad quantitative
measures geared to participation and contact
rather than client-oriented outcomes;
• are designed within systems rather than across
systems;
• allow service integration to substitute for
systems integration.
taken despite the fact that each individual in the group, if polled privately, would say the
result is something he does not desire (think about the federal health care reform bill that
1
This scenario was first presented by the philosopher Zeno and later expanded upon by Aristotle as an
argument against pluralism⎯the belief in the simultaneous existence of many things rather than one. Zeno
was defending Parmenides of Elea, a Greek philosopher from 5th century BCE, against critics who rejected
his singular view of reality. I’ll leave it to political theorists to debate the merits of pluralism.
18
©
Ira J. Chasnoff, MD
from: The Mystery of Risk
Published by NTI Upstream, 2010
was under consideration by Congress). Best intentions lie behind most examples of the
GoodEnough Syndrome. But multiple forces grounded in political and economic realities
elbow their way to the front of the room, dilute the best intentions, and drive us toward
that lowest common denominator through which we can claim success.
Political pressure plays no small role, and even well-intentioned bills fall prey to
the effacing effects of compromise. On June 25, 2003, President George W. Bush signed
the Keeping Children and Families Safe Act, reauthorizing the Child Abuse Prevention
and Treatment Act (CAPTA) through federal fiscal year 2008.
Within this
reauthorization were a number of additions to the eligibility requirements states had to
fulfill in order to receive their federal share of child abuse prevention money. Among
these additions, one stands out: the requirement that hospitals and all health care
personnel report any child to the state’s child welfare system if the child is born
“affected” by maternal use of illegal drugs during pregnancy or exhibits withdrawal
symptoms resulting from prenatal drug exposure. The child welfare system is then
responsible for developing a “plan of safe care” for every reported drug-exposed infant
and referring these children to early intervention services for infants and toddlers with
disabilities. At first glance the program, funded through Part C of the 2004 federal
Individuals with Disabilities Education Act (IDEA), appears to be a good idea.
But what is the reality? The intended goal of this provision was to develop a
system that ensures all children born at risk due to maternal substance abuse will have
access to early intervention services. From a moral perspective, no one could argue with
the program’s intent; to vote against it would be forever to wear the slur “anti-child” and
“pro-drug abuse.” The legislation passed easily. However, no funds were made available
to institute training for hospitals and health care personnel on how to recognize a
substance-exposed child. Worse, it was unclear what the term “affected” really meant.
Would a positive urine toxicology qualify a child as “affected?” Finally, where was
alcohol in the legislation? Although alcohol is the leading cause of disabilities among this
population of children, the bill specifically excluded prenatal alcohol exposure as a
condition for referral. In light of what is known in the scientific community about the
health and developmental risks alcohol poses to these children, passage of the bill can
only be seen as the result of a crisis of confidence. Stakeholders cowed when it came
19
©
Ira J. Chasnoff, MD
from: The Mystery of Risk
Published by NTI Upstream, 2010
time to settle on the bill’s final language. Critics speculated that the CAPTA legislation
was unduly influenced by the economic interests of the beer, wine, and liquor industries.
Undoubtedly, the presence of a robust alcohol lobby does not make for healthy discourse
about the proper course of intervention for alcohol-exposed children.
CAPTA is just one of many examples of how economic pressure can stifle
programs for at-risk children. The 2009 economic downturn brought a rash of
GoodEnough decisions, not the least of which was dismantling the social service systems
in many states. For decades many California counties’ mental health crisis centers
provided immediate access to individuals with an acute mental health emergency. With a
simple telephone call, families in need were able to access assessment, treatment, and
institutionalization, on an emergent basis. However, as funding in the state dwindled,
these crisis centers were among the first to be dismantled. Now, in some California
counties, if a citizen calls the mental health crisis center, the recorded message advises
the family to go to the emergency room—a visit that costs many times more than
entrance into the mental health system through a crisis center and is much more
intimidating for someone in the midst of a mental health emergency.
The abstract child
Language is the foremost tool of the GoodEnough Syndrome. Images and labels
provide a framework for contemplation and communication. For example, the word
“circus” brings to mind performances in three rings, spotlighted thrills—a tent filled with
laughing and applauding children; we do not “see” the word circus but the pictures it
evokes. In the case of the GoodEnough Syndrome, language is used to summon dark and
sinister images. The abundant use of the phrase “crack baby” in the 1980s, for instance,
cemented in the popular imagination the image of a tremulous, seizing baby, abandoned
in his bassinet by his drug-addicted mother living on the fringe of society. The knee-jerk
response of many states was to create laws that punished the mothers. This was easy to
do since the media’s portrayal of crack using pregnant woman, in general, was African
American, inner city women, who, because of their own moral lethargy, didn’t deserve to
have children anyway. As long as society could mythologize substance abuse in the
language of “them” vs. “us,” the children and families remained enigmatic. As a society,
20
©
Ira J. Chasnoff, MD
from: The Mystery of Risk
Published by NTI Upstream, 2010
we would “rescue” the babies, throw their mothers in jail, and sleep well at night. This
was good enough.
The media have had their hand in this injustice. As we saw in the 1980s, attempts
to clearly define the difficulties that drug-exposed babies present frequently are distorted
when seen through the lens of the media. Immediately after reports of normal cognitive
functioning in cocaine-exposed children emerged in the scientific community, there was a
swing in how the issue was presented in the nation’s newspapers. Suddenly, news outlets
were reporting that prenatal cocaine exposure had no impact on child outcome. This
pendulum of contradictory information guaranteed children would remain an abstract
illusion of small advocacy groups on one side of the question or the other. As a nation,
we very adroitly developed policies to punish in the guise of protection, rather than
policies that would support improved family functioning and child outcomes.
Deficit labeling
We use words for easy access. Even though we now have a wealth of data that
describes both the strengths and weaknesses of children prenatally exposed to cocaine,
methamphetamine, heroin, and a variety of other “hard” drugs, our language tends to
focus on the weaknesses. It is much easier to connect emotionally to a mental picture of
the fragile, tremulous child who has been harmed by his mother’s drug use than to the
child who is relatively healthy and thriving because of early intervention. Prevention has
no meaning in the hard vernacular of politics.
Deficit labeling dates back to the 1950s, when anthropologist Oscar Lewis,
writing of a “culture of poverty,” claimed that the poor belong to a special culture that
has existed in poverty for so long they have adapted to its characteristic features.
According to Lewis, many of the poor are burdened by a sense of helplessness and
dependency and have no desire to escape the conditions in which they live. Echoes of this
view can be heard today. Barbara Bush, touring the Astrodome where many of New
Orleans’ poorest citizens were being warehoused following 2005’s Hurricane Katrina,
observed, "What I'm hearing, which is sort of scary, is that they all want to stay in Texas.
Everybody is so overwhelmed by the hospitality. And so many of the people in the arena
here, you know, were underprivileged anyway so this [chuckle]⎯this is working very
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well for them.” The former First Lady expresses the skepticism, abounding in this
country, regarding the intentions of the poor. The undertone is that the victims of
Hurricane Katrina are lazy and morally deficient, unworthy of our help. We see this
attitude reflected in the punitive approaches several states have adopted in response to
pregnant women who use drugs. Addiction is a matter of will power, so the thinking
goes, and if the women really wanted to stop using they would. This attitude, in addition
to reinforcing dangerous stigmas, ignores the scientific reality that addiction is a chronic,
recurring disease, not a moral failing.
Labeling and diagnosis
Access to medical and psychological services also is grounded in labels, though
instead of using terms such as “underprivileged,” we refer to children based on
“diagnoses.” He’s bipolar, or she’s ADHD. The absurdity of how we typically use these
labels becomes clear when we consider referring to diseases this way: she’s cancer, or
he’s Parkinson’s. However the fact remains that in most states, in order for a child to
receive eligibility and reimbursement for early mental health services, the child must
receive a diagnosis based on clinical labels outlined in DSM-IV. Although this label may
serve as a form of necessary classification, it also stigmatizes a child and in fact may lead
to a self-fulfilling prophecy, especially when the child is consistently viewed through the
prism of the diagnosis.
Think back to chapter 6 when we discussed Alex, the three-year-old child with
emotional dysregulation resulting from alcohol-induced changes in the corpus callosum.
You’ll recall that Alex was experiencing “rages” without any precipitating event; his
emotions were labile and unpredictable. Numerous children like this are referred to
Children’s Research Triangle with a diagnosis of bipolar disorder; yet the criteria for this
diagnosis were created for adults. Assigning these diagnostic labels to preschoolers
qualifies the children for mental health services but risks driving the child toward
inappropriate medication. More often than not, children like Alex already are on
powerful, anti-psychotic medication when they arrive at our clinic. Here again, a prime
example of The GoodEnough Syndrome: we have made the child eligible for services, but
at the cost of inappropriate treatment.
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What if we moved away from requiring DSM-IV diagnoses for the treatment of
young children and talked more in terms of “functional diagnoses”? By functional
diagnosis, I mean utilizing diagnostic terms that clearly describe a child’s behavior and
consequently drive treatment planning and service delivery. A few states currently have
moved to such a system. Expanding on Stanley Greenspan’s DC-0 to 3 diagnostic codes
for children birth to three years of age, these states grant Medicaid reimbursement and
service access to all children through five years of age who meet criteria for a functional
diagnosis. In the past, “bipolar disorder” was simply the most convenient diagnosis that
would allow Alex to receive services. Now he would receive a diagnosis of “emotional
dysregulation,” directing a course of treatment based on sensory integration, dyadic, and
developmental therapy rather than medication. In addition, we move away from a term
like “bipolar” that implies, however subtly, that this child is unteachable and
unredeemable, a child for whom no amount of money or effort will make a difference.
The politics of service access
The movement toward functional diagnoses is important for another reason. It
illustrates how vital government funding is as a policy instrument to guide access to a
variety of services, such as early intervention and educational programming. Funding
granted through IDEA is an expression of the political will that all children with early
developmental delays should have access to early intervention services. IDEA contains
federal legislation mandating that children birth to three years of age receive services if
they meet specific criteria including documented developmental delays or a medical
diagnosis associated with developmental delays (such as Down Syndrome). The third set
of criteria to guide eligibility, “demonstration of risk for developmental delays from
environmental or other factors,” are left to each state to define.
Although the legislation appears to be a step in the right direction, the problem
lies in the narrow definition of eligibility under which children are granted services. A
review of current policies across states reveals guidelines that define access based on
eligibility rather than need, restrictions that limit the range of services provided, and
therapeutic choices that selectively serve economic rather than client ends. Despite good
intentions, we have created a machinery of neglect that serves some children well but
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leaves the great majority to fend for themselves. Children with minor speech and
language delays, for example, do not qualify for services until the untreated speech
difficulties become worse or begin to affect other areas of development. Thus, we focus
our resources on children who are in the worst shape, and who, as a result, probably will
have a less successful response to services provided.
Of course, severely affected
children need services and should receive them; but, by taking such an all or nothing
approach, we are eliminating opportunities for children with milder problems who need
services and likely would benefit the most.
GoodEnough economics
There is no eluding the fact that economic realities drive health care and social
services policy decisions. Programs must be driven by results, they must be affordable.
Nevertheless, in making these decisions, policy makers perpetuate the GoodEnough
Syndrome by using economic data that are limited in scope and demonstrate a lack of
understanding of the family dynamic lying at the core of economic hardship. For children
exposed to alcohol and other drugs during pregnancy, the most commonly applied
economic data examine state and national costs for treating Fetal Alcohol Syndrome
(FAS). Data focus on health-related factors: the costs of care for low birth weight infants,
surgical correction of alcohol-related birth defects, heart defects, auditory defects and
moderate or severe mental retardation. Since 1980 there have been multiple studies of
the annual cost for FAS, ranging widely in their estimates, from $250 million to $3.2
billion.
However, what is missing in all of these studies is the out-of-pocket cost foster
and adoptive parents take on in caring for a child who falls into the broader spectrum of
deficits produced by prenatal alcohol exposure. These families often lack the financial
resources and support to ensure the child’s access to services, yet are excluded from
programs because their child does not meet stringent eligibility criteria. Children with
FAS and mental retardation receive services; children with ARND most often do not. No
economic studies directly address the variability in diagnosis that occurs across the fetal
alcohol spectrum, the sequence of treatment of the organic anomalies associated with
ARND, the psychological and behavioral costs associated with ARND, the quality of life
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of individuals with ARND, the effect of the family environment on the child with ARND,
the progression and treatment over time of ARND, and accessibility of services within
the community for diagnosing FAS and ARND. Most important, while existing studies
focus on societal, health care, provider, and payer costs, none collects data to address the
full range of costs to the families who are raising these children.
The financial support provided to foster and adoptive parents who are raising
children with FAS and ARND varies widely across the states but falls consistently below
the cost of raising a child with no problems. For example, the U.S. Department of
Agriculture estimated the average cost of raising a healthy nine-year-old child, excluding
medical care, was $8,260 per year in 2000. However, during that same period, the
average amount provided to foster parents to meet the needs of a normal nine-year-old
child was $4,932 per year –about half of the actual cost to raise a child who has no
cognitive or behavioral disabilities. In Illinois, this rate can be enhanced depending on
the child’s age, the child’s special needs, the foster parent’s training and experience, or
emergency status, but still remains below actual costs. These low rates of reimbursement
stand in stark contrast to state child welfare agencies’ concerns regarding foster and
adoptive parent recruitment and retention. Expenses related to recruiting and training
parents and the psychological cost of foster parent turnover to a vulnerable child magnify
the problem. Although adoption subsidies are available in many states, many adoptive
parents do not know to request such long-term support.
These issues are complicated by the fact that families often do not know they are
adopting a high-risk or special needs child with prenatal alcohol or drug exposure. But as
the exposed child grows older, psychological problems complicate the biologically based
cognitive deficits, resulting in a variety of behavioral problems and emotional
disturbances that could not have been predicted when the adoption subsidy was being
formulated. Likewise, social relations present increasing challenges for the alcoholexposed child. Commonly, family members share the social costs of alcohol- and drugexposed children through the emotional pain and isolation associated with raising a child
with special needs.
The especially complex nature of prenatal exposure makes economic modeling
extremely difficult. As a starting point, though, I propose a bio-psychosocial
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representation of the economic costs of Fetal Alcohol Spectrum Disorder (FASD),
designed to capture the full spectrum of alcohol exposure as well as the full spectrum of
the family’s economic burden. At its heart the model considers three key questions: (1)
Who should be factored into a cost model? (2) Who bears the greatest cost? and (3) How
do we assess costs accurately and precisely?
In Figure 13.1, the provider is at the center because this is where all the money
ultimately gets funneled. The family overlaps all payor levels since the cost of caring for
the child is ultimately the family’s responsibility.
FIGURE 13.1 Economic Model for FASD
Society
Health Care System
Payor
Provider
Patient /
Family
As the model is constructed, there needs to be a high degree of precision in
defining what constitutes cost. Under current methods of cost analysis, costs for society,
insurance companies, the health care system, and the provider are the primary
considerations. Although the family is most affected by the costs of raising a child with
FASD, what those family costs are remains a distant concern. By reversing this usual
strategy and approaching cost analysis from a family perspective, we are able to address
indirect and intangible costs that usually are lost.
These hidden costs include the
emotional costs and lifestyle adjustments that accompany raising a child with FASD.
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Thus, the bio-psychosocial model of economic burden addresses family costs across three
domains that overlay societal, payor, health care system, and provider costs:
•
Direct costs
This is the category of costs most commonly
considered when addressing the economic burden of a particular disease
entity; namely, those costs directly associated with paying for
interventions or treatment strategies required by the child with FASD. An
important consideration in measuring direct costs is the source of
payment. While some direct costs are paid directly by the family, others
are paid by outside parties such as insurance companies and state welfare
agencies. Thus, in most cases, there will be a difference between the
services a family uses and those they actually pay for. While both types of
expenses need to be considered, there never has been a focus on the
family’s out-of-pocket expenditures. This is a necessity if we are to
acknowledge that many families must seek services that are not funded
through the usual payor systems.
•
Indirect costs
These costs, attributed to the child’s treatment but
incurred as a result of obtaining auxiliary services or because of the
increased strain on family functioning, place a significant burden on the
family and have never been measured. Most notably, productivity losses
attributable to caring for the child result in a decrease in production and
income for one or both parents and can encompass a broad range of costs,
including days of work lost, family disruption, changes in work patterns,
changes in leisure time, and additional expenses such as those for family
therapy.
•
Intangible costs
Families raising a child with FASD suffer a wide
range of intangible costs, which certainly is a much less quantifiable
subset of indirect costs. Intangible costs account for non-material losses
for the families: anxiety, fear, pain, suffering, social isolation, to name a
few.
Unfortunately, it is unlikely that the comprehensive studies needed to understand
family costs will ever be undertaken. It is good enough to bemoan societal and payor
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costs for FASD. Exposing the economic reality of the cost of FASD to families would
force child welfare systems to increase support to the families. In fact, when such a study
was proposed to the Illinois Department of Children and Family Services, the former
director refused to sign off, stating, “If we know what it costs to raise a child like this,
then we’ll have to pay foster parents enough to take the children in. We can’t afford it.”
Expediency
The political dynamics of the GoodEnough Syndrome demand we choose only
two from among three core elements for effective early intervention: good, fast, and
cheap. As providers, we of course seek programs that are good and fast, programs that
impact children in a positive manner within a short time frame. However, those kinds of
programs are very expensive. If we turn to fast and cheap, it is doubtful that any good
will be accomplished. Good and cheap might work, but the program necessarily will be
conducted in a very focused manner, limited to very few children. With this approach,
meeting the needs of all the children with prenatal substance exposure⎯or any type of
developmental delays⎯is impossible.
Instead of this pick and choose approach, what is desperately needed is a viable,
sustainable set of policies and practices that combine moral decision-making based on
how we want the world to work, economic reality as to how the world does work, and
scientific thinking that puts into practice effective and proven strategies to deliver the
highest quality of care. Within such an approach, family-based prevention and early
intervention become an economic as well as a moral obligation.
Recognizing the GoodEnough Syndrome
The GoodEnough Syndrome lurks behind every piece of state and federal
legislation. As an advocate for children, watch out for oversimplified data crunching:
policies and programs come and go, but rarely are they clearly evaluated. Federal and
state programs, in particular, are notorious for relying on quantitative rather than
qualitative outcome to define success. Evaluation is geared toward quantifying
participation and contact, rather than asking meaningful questions that tell us if the child
is actually getting better.
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Beware the myth of sustainability. No matter how successful a program may be
on the site level, the fact is that grant-funded projects are not easily generalized to a
community. The small population of participants, the low staff-to-child ratios, and the
constantly changing demographic, social, and economic conditions challenge successful
evolution of the program to institutionalization within the community. Nevertheless,
requirements for “sustainability” are tossed around; project officers assure grantees that if
their program is successful, other funds will become available through existing funding
streams such as Medicaid. This simply is not true. Rather, it is the funding agencies’
way of saying, “We’ve done what we can. It’s time for us to move on to the next
problem.”
In other words, “Our funding your start up is ‘good enough.’ Now these kids
are your problem.”
Watch out for policies marked by ethical sleight-of-hand, those that diminish the
impact of a program on children by appropriating resources toward competing demands.
This is especially true when demands are driven by pork-barrel politics. Despite enticing
political promises, the net impact of Illinois lottery dollars for education was minimal
because for each lottery-generated dollar given to education, a dollar was siphoned off to
support another arm of the state budget. And of course there is the classic property tax
funding scheme, well described in several works by Jonathon Kozol, in which the poorest
children go to the most poorly financed and lowest functioning schools. Finally, my
favorite — the “any body is better than no body,” stonewalling tactic. Through this notso-subtle form of obstructionism, we see the use of political hacks to fill governmental
roles in the hope that nothing will happen. Think Hurricane Katrina, FEMA.
I met Danny twenty-three years ago. He was sitting on his mother’s lap, a
robust, full-cheeked six-month-old with the brownest, most knowing eyes I
had ever seen in an infant. “There’s something wrong,” Sarina said. Her
voice was strong, her gaze direct.
“Wrong?” I repeated. “He looks fine to me.”
“That’s what all the other doctors say, but I know different.”
There was no denying Sarina, whose position in front of the
doorway made it clear I was going to listen to her story. Danny had been
born to a mother who showed up one day in the hospital, delivered, and
left, never to be seen again. Sarina took Danny into her home three days
after his birth; he has been living with her since. Experience with her own
children and grandchildren told Sarina right away that something was not
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right. Danny was irritable and inconsolable. He pulled away from her
when she tried to hold him close, and the more she consoled him the worse
he got. There were two episodes during which he seemed to “go blank,”
turning from her and staring at the opposite wall. His feeding was erratic,
and although he would eventually drink the appropriate amount of
formula, it took hours to feed him. It seemed that one feeding would run
right into the next.
Sarina took Danny to a series of doctors, but the advice was
always the same. “You’re too old to be taking care of a new baby. Go
home, relax, and call DCFS to come get him.” Whether out of pity or
pure stubbornness, Sarina ignored them all. She heard about our center
from another foster mother, scheduled an immediate appointment, and
appeared early one morning poised and ready for anyone who tried to
turn her away.
During the examination, Danny lay quietly, giving way to tremors
and irritability when I disturbed him. His behavior would escalate
rapidly, reaching a peak of crying and shaking, then suddenly quiet into a
deep, impenetrable sleep. Sarina’s eyes met mine, and I continued the
exam.
Danny’s face appeared flattened. His eyes were set wide apart,
and the bridge of the nose was flat and broad; his lips looked thin; his
ears were situated low down on the sides of his head, almost meeting the
jaw line. Although well nourished, he was underweight and his length and
head size fell far below normal for a six-month-old child.
Sarina and I returned to the respective sides of the lone desk in the
office. “Do you know anything about his mother?” I asked, watching her
cuddle Danny in her arms as she tried to comfort him.
“No, that’s all DCFS had,” she said.
“Well, with nothing more to go on, I can’t really say anything for
sure. But Danny looks like a child whose mother used alcohol and
drugs.” Sarina nodded. Normally it’s a hard sell to convey this
information to a foster mother, but Sarina had made her own diagnosis,
months ago. “I know,” she said.
As Sarina sat and listened, I outlined the various tests and
procedures we would put Danny through over the next several days. She
took in the information, patiently, in what I would learn was her usual
style: gather the facts, ask questions, make a decision. Patty came into the
room to draw blood, Eilene scheduled the necessary tests at the hospital,
and Sarina agreed to return in one week to get the results.
The week went quickly until the day Danny’s results came back
from the hospital. He was HIV positive. I caught my breath, said a short
prayer, and moved on.
Sarina appeared the next week, again wheedling for the first
appointment in the morning, probably hoping to catch me at my freshest.
“Sarina, the news isn’t good.” I was stumbling over my words as I tried to
explain to her what the positive results meant to her son. “At this young
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age, we don’t know if it’s positive because he actually caught AIDS from
his mother or it’s positive because he was just exposed and not infected.
There’s about a 30% chance he actually will have AIDS, but we won’t
know for sure until he’s about fifteen months old.” The last words came
out in a rush. I realized I’d been holding my breath. Sarina sat quietly for
a moment.
“What’ll we do?” she asked. I told her we had to wait and see.
The next several months were spent in watchful anticipation.
Danny continued to struggle with the normal developmental milestones
that most infants breeze through. The arrhythmia of days filled with
doctors and needles collapsed into restless nights punctuated by brief
blessings of sleep. His adoption went through, and Sarina was on her own
with no further support from DCFS.
By two years of age, an HIV test that remained positive and a
series of illnesses confirmed Danny’s diagnosis of AIDS. He and Sarina
lived a life circumscribed by medication schedules, doctors’ appointments,
and feeding strategies to try to fatten him up. When Danny was three years
old, a neighbor from the apartment building came to visit. Seeing a book
on the coffee table, she commented, “Oh, now I know why Danny’s sick all
the time. He has AIDS.” Sarina did not hide behind a lie but confirmed
the neighbor’s suspicions. A few days later, a petition, signed by almost
all of the tenants in the building, requested that Sarina and her family
vacate the building. The courts said, “No,” and they remained in their
home.
In eighth grade, Danny decided to go out for the middle school
basketball team. His illness was a well-known fact by this time and had
been handled quite well by the school district, so it came as a surprise
when the eighth grade mothers presented a petition to the coach stating
that if Danny were allowed to play, they would not allow their sons to be
on the team. The eighth grade boys responded in kind with their own
petition: “If Danny doesn’t play, we don’t play.” The children won out,
and Danny became a member of the team. In a made-for-TV movie, Danny
would have come off the bench and scored the winning points in the
district championship game. But Danny was a pretty lousy player. Well
meaning and a good sport, but clumsy with a basketball.
The next few years were spent in an unremitting cycle of relapse
and recovery, with T-cell levels rising and falling on what seemed to be a
whim. School was a struggle: reading and learning disabilities impeded
Danny’s comprehension of core elements of the basic curriculum.
During his freshman year, at the age of fifteen, he made an
appointment with me. He arrived at my office with his fourteen-year-old
girlfriend. They were going to have sex and wanted to know the best way
to protect her. An immediate surge of gratitude that they had come to
discuss this with me quickly gave way to panic. I lectured, pleaded, and
bargained with them — to no avail. So I sent them on their way with the
best advice I could give. “Wear three rubbers.” I knew this was
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unreasonable and counter to any scientific evidence, but I figured by the
time he got the third rubber on, the desire would be gone. My strategy
worked: three days later Danny called me to report that he and his
girlfriend had broken up without consummating their relationship. I was
ecstatic; Danny was heartbroken. I assured him that his time would come,
just not yet.
All was relatively quiet for the next two years, but then Danny and
Sarina appeared once again at my door. By this point Danny was on
multiple medications, almost always sick from AIDS or the side effects of
his prescriptions. At the age of seventeen, hardly able to go to school, he
had made an end-of-life decision; he was stopping all his medications.
We started with the facts as to what would happen if he stopped his meds.
He understood the consequences. We resorted to begging. He was not
swayed; he simply had had enough. Danny stopped his medications, and
within two months he was hospitalized with seizures. The AIDS virus had
invaded his brain. Miraculously, and for reasons not entirely clear, Danny
was able to pull through. After a six-week course in the hospital he went
home, scared enough by his experience to start the medications again.
Then in 2003 a breakthrough came: Danny began taking a new,
experimental AIDS cocktail.
Danny is now twenty-four years old and has no detectable AIDS
virus. He calls me once a year on my birthday, and I get the occasional
call from Sarina, whose main complaint is that Danny refuses to get a full
time job because his band takes up all his energy and attention. He’s quite
sure that one day he’ll make it to American Idol. Like his mother,Sarina,
he isn’t quick to sell himself short.
Addressing the GoodEnough Syndrome
We are a nation that professes to value children: Primus inter parus. . . Children
are first among equals. However when issues are put to balance other interests and
investments take precedence. There is no point railing against those things we cannot
change. In the arena of child welfare, extreme recommendations too often substitute for
viable policy. Instead, here are a few simple and cost-effective policies we can pursue
immediately to change the lives of children for the better.
•
Public health
Implement universal screening programs for all pregnant women that will
identify those women at risk for alcohol, tobacco and illicit drug use,
depression, or domestic violence. The purpose of such screening is to engage
each woman in an educational intervention that will motivate her to make
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healthy decisions for herself and her unborn child; the purpose is not to make
prenatal clinics an arm of the child welfare system.
•
Child welfare
Develop research-based policies for decision-making regarding placement of
children identified at risk from prenatal alcohol or drug exposure. Within the
CAPTA legislation, include prenatal alcohol exposure as a risk factor and
create national guidelines as to what an “affected” infant is. Develop support
systems and education and training programs for foster and adoptive parents
who bring substance-exposed infants and children into their homes, so to
reduce the high rates of placement disruptions for the child.
•
Early intervention and treatment
Define service access to early intervention and treatment based on the child’s
needs rather than eligibility criteria. Eliminate the need for young children to
meet DSM-IV criteria in order to qualify for mental health services. Rather,
develop a nationally accepted “crosswalk” between functional diagnoses,
such as those described in the DC 0-3 diagnostic scheme, and qualifying
DSM-IV diagnoses.
Expand early intervention services to include infant
mental health programs.
We are caught downstream, trying to adapt families and children to existing
policies and practices rather than promoting innovative approaches that better address the
new morbidity that exists among families and children in the United States. In so many
ways, our children are drowning. Yet we continue to pour resources into rescuing our
children from the river rather than going upstream to find out who’s pushing them in.
And why? Because it’s easier to hide behind labels of risk than to work to improve
children’s lives.
In every way, Danny was—and is—a child “at risk.” But Danny has a mother
who shortcut the systems that blocked her access, ignored those professionals who told
her all hope was lost, and refused to accept health, mental health, and educational
systems that were good enough for a child with AIDS. Sarina accepted possibility but
denied probability when “risk” was used to describe her child. She built on Danny’s
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promise. And Danny not only survived, he flourished. The balance between risk and
promise? That’s the mystery of risk.
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