Advocating for the Proper Educational Services and Community Support for Children with FASD

William J. EdwardsMonica LeinbergerWilliam J. Edwards, Deputy Public Defender, Los Angeles, CA
Monica C. Leinberger, Lower Kuskokwim School District, Bethel, AK


Summary: The authors outline steps to ensuring that comprehensive, supportive services are provided in order to foster a better life outcome for FASD-affected children.


Many families entering the child welfare system through the dependency and delinquency courts do so as a result of familial alcohol and other drug abuse. Children with FAS often come from abusive and non-nurturing home environments (Paley and Auerbach, 2010). It is estimated that as many as 80% of children in foster care have been prenatally exposed to illegal substances (Dicker and Gordon, 2004). Many parents who lose custody of their children have problems with chemical dependency and, as a result, the mother may have consumed alcohol during her pregnancies. If a dependency court judge has evidence that the birth mother has a substance abuse problem, an evaluation of the mother can be ordered to determine her history of alcohol use and misuse, especially during pregnancy. If there is a history of alcohol abuse, the mother can be involved in treatment in order to prevent the subsequent birth of alcohol-exposed children.

Once there is established evidence of maternal use of alcohol during pregnancy, the attorney and child advocate should request that the court appoint appropriate experts to evaluate the child for FASD. Both the attorney and the child advocate should be aware that later-born children of alcoholic mothers are at much greater risk for FAS than their older siblings (Abel, 1987). This is an important factor of which the court needs to be aware. As an example, in a case handled by one of the authors of this article, the client had two other siblings with prenatal alcohol exposure. The older brother was under the supervision of a social worker familiar with FAS who arranged for the brother to be evaluated for the disability at an early age. The brother was also found to be eligible for services for those with intellectual disabilities from the California Regional Center. The client went through 27 years of her life without a proper diagnosis. The dependency court attorney, the judge, her social worker and every medical doctor treating her never thought to have her evaluated for FAS. The client was first institutionalized at the age of four and remained institutionalized for most of her 27 years. She had seven foster care placements and 15 psychiatric hospitalizations during the time her case was handled by the dependency court.

Once the child receives a diagnosis of fetal alcohol syndrome, the attorney representing the child can then advocate for services from a state developmental disability organization. Many children diagnosed with FASDs have IQs higher than 70 and cannot be diagnosed with a developmental disability although they have significantly lower adaptive behavior skills (Edwards and Greenspan, 2010). The court and the attorney representing the client with FAS need to be aware of the following:

Some state statues define a developmental disability to include the diagnosis of FASD. For example, Minnesota Statute 252.27 (2012) and Alaska Statute 47.20.290 (2012) define a disability to include FAS. In states where FAS or FASD is not included in the definition of a “developmental disability” attorneys can advocate that the child has a developmental disability acquired prior to the age of 18 since they were born prenatally exposed to alcohol. The other argument attorneys can make is that the child has a “disabling condition” that is closely related to an intellectual disability or requires treatment or services similar to that required for individuals with an ID. See for example California Welfare and Institutions Code 4512. See also Samantha C. v. State of Developmental Services 185 Cal. App. 4th 1462 (2010).

Attorneys representing children with FAS can request that attorneys from disability rights law offices and disability law centers throughout the US become involved in advocating for needed services for which they are eligible.

The attorney representing the child can also contact agencies like the Arc in their state and the National Organization on Fetal Alcohol Syndrome (NOFAS) asking for advocacy assistance.

If a child with FASD grows up without appropriate interventions, including educational and supportive services, the likelihood of secondary disabilities is greatly increased. Secondary disabilities may include disrupted school experience, trouble with the law and confinement. If the individual has a FASD diagnosis, they may qualify for special education support that will address academic concerns in reading, writing and math, as well as behavior, speech/language, occupational therapy or physical therapy, depending on the youth’s needs.

Most students with FASD do best during the early childhood years when the atmosphere provides many opportunities for instructional repetition, hands on learning, longer processing time and structure. Elementary level children may have problems with information processing, memory, impulsivity, social immaturity and difficulty with abstract concepts such as time/money. In middle school/junior high students may begin to fall through the cracks, and by high school they will have many academic problems.

Interventions that include more processing time, built in sensory breaks, multi-sensory approaches to learning, rethinking learning space/environments, and providing structure throughout the day (from the moment they arrive to when they leave the school grounds) will help provide a greater chance for academic and behavioral success.

Those working with and around individuals with FASD will experience less frustration if they understand that this is a brain-based disorder, that it is more likely that an affected youth “can’t” rather than “won’t” perform a requested task, and that affected youth function at about half their chronological age. Comprehensive, supportive services are the key to fostering a better life outcome for these disabled children.

Author biographies:

William J. Edwards is a deputy public defender with the Los Angeles County Public Defender’s Office, and has served in that position since 2001. From 2008 to 2011, he worked in the mental health court where he represented people with mental retardation and mental illness. Since 1994, Edwards has specialized in the representation of people with mental retardation/developmental disabilities in the criminal justice system.

Edwards is a member of the editorial board of The Journal of Psychiatry and Law and served as special editor of the journal to spearhead a special issue on fetal alcohol syndrome and the law. Two volumes of this special issue were released in 2011. In 2012, the National Organization on Fetal Alcohol Syndrome (NOFAS) honored Edwards by placing his name into the Tom and Linda Daschle Fetal Alcohol Spectrum Disorder Hall of Fame. Last year Edwards was appointed to co-chair the National Advisory Board for the National Organization on Fetal Alcohol Syndrome.

Monica Charles Leinberger is a teacher at Gladys Jung Elementary School, Lower Kuskokwim School District in Bethel, AK. She is chairperson of the Alaska FASD Partnership and a member of the FAS Diagnostic Team organized and supported by the Yukon-Kuskokwim Health Corporation, Bethel, AK.


References:


Abel, E. L. (1988) Fetal Alcohol Syndrome in Families. Neurotoxicology and Teratology, 10, 1-2

Alaska Statute Section 47.20.290 (2012) - Services or Developmentally Delayed Children)

California Welfare and Institutions Code 4512 (a) (2012)

Dicker, S., & Gordon, E (2004) Building bridges for babies in foster care; The Babies Can’t Quit initiative, Juvenile and Family Court Journal, 55 (2) 29-41

Edwards, W., & Greenspan, S., Adaptive behavior and Fetal Alcohol Spectrum Disorders (2010) Journal of Psychiatry & Law (38) Winter, 419-447

Minnesota Statute 252.27 (2012) - Services for Persons with Developmental Disabilities

Paley, B., Auerbach, B., Children with FASD in the dependency Court System: Challenges and Recommendations (2010) Journal of Psychiatry and Law (38) Winter, 507-554

Samantha C. v. State Developmental Services (2010) 185 Cal. App 4th 1462

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