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FASD: Identification and Advocacy

By Teresa J. Grogan – September 28, 2012


Children with brain impairments such as fetal alcohol spectrum disorders (FASDs) can sometimes find themselves in court as the respondents in juvenile delinquency cases, as the subject children in neglect and/or abuse, or fighting for services in educational settings. Without the proper diagnosis and treatment of an impairment or a disability, the court will not have the necessary information to issue the most productive disposition or to order the services that will meet the needs of the child. Many impairments and disabilities are easily recognized and diagnosed; FASDs are not. Therefore, the job of counsel with clients who may suffer from an FASD is to first identify the possibility of an FASD, obtain evaluations of clients to confirm or rule out that diagnosis, and then, after a positive diagnosis, advocate for the identified needs of that child.


On June 12, 2012, the American Bar Association’s Section of Litigation and the ABA Center for Continuing Legal Education cosponsored a live webinar teleconference entitled “Fetal Alcohol Spectrum Disorders (FASD): What You Need to Know to Help Your Clients,” which set out to assist counsel in all of the above areas. The information presented in that webinar is summarized below.


What Is FASD?
The only way a child can have an FASD is if the mother drank alcohol during pregnancy. Once the damage is done to the fetus, the effects are irreversible. Therefore, advocates in this area stress that no amount of alcohol consumption during pregnancy should be considered safe. The word “spectrum” is integral to an understanding of this issue because the effects present themselves in a variety of ways depending on the frequency, amount, and timing of the consumption of alcohol. There is a positive correlation between the amount of alcohol consumed and the detriment to the child. In addition, because different parts of the fetus are developing throughout pregnancy, drinking during different parts of the gestation period can have dramatically different effects.


FASD is actually an umbrella term that covers various diagnoses. Fetal Alcohol Syndrome (FAS) is the easiest to diagnose. It is also the rarest diagnosis, because a child must have measurable brain damage and growth within the bottom 10 percent, and he or she must also exhibit all three of the following facial characteristics: small eye openings, a smooth area below the nose and above the upper lip, and a thin upper lip. Partial FAS is the diagnosis if a child does not have one of the traits listed above.


Alcohol-related neurodevelopmental disorder (ARND) is diagnosed if a child has suffered brain damage but does not exhibit any stunted growth or abnormal facial characteristics. This diagnosis is very difficult to obtain without evidence of an alcohol exposure history.


An FASD is not an inherited disorder. It can only occur if the mother ingests alcohol during pregnancy. However, addictive behavior can be inherited, and FASD sufferers are also more susceptible to addictive behavior. This tends to promote a cycle of babies born with an FASD to mothers who also have an FASD.


Practice Points
The key practice points to consider are how to identify the possibility that your client may have an FASD, how to get your client diagnosed properly, and how to advocate once a positive diagnosis is obtained. Special emphasis should be placed on identifying and diagnosing this condition as soon as possible because early diagnosis has been found to produce the best long-term results for children.


How to Identify an FASD
As previously stated, if a child has any or all of the physical characteristics described above, the explanation could be an FASD diagnosis. Beyond easily recognizable characteristics, the initial diagnosis of an FASD is difficult because there is no universal set of behaviors. This is due to the fact that the behavior the child exhibits depends on the part or parts of the brain developing at the time the alcohol consumption occurred. The materials included with the webinar contain an FASD Experts Screening Questionnaire, which lists some factors, including immaturity and naïveté; eagerness to please or stubborn resistance to the obvious; inability to provide a coherent, detailed narrative; inability to concentrate; apparent inability to remember what he or she is told from appointment to appointment; tendency to be led by more sophisticated peers; obliviousness to risk; impulsivity; and opportunistic behavior. The discussion during the webinar also identified behaviors such as difficulty planning, organizing, and prioritizing; lack of judgment, memory, and process speed; and failure to grasp abstract reasoning or figurative speech.


Practitioners should also watch for children who already have other diagnoses, as children with an FASD often have multiple diagnoses. Two of the most common are attention-deficit/hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD).


Sometimes counsel will find that the child client is receiving treatment for a different diagnosis and that the treatment isn’t working. That may be due to the fact that the prior diagnosis is incorrect or incomplete. For example, a child with an FASD may exhibit many of the same behaviors as a child with autism, but the treatment for autism won’t have the desired effect on a child with an FASD.


Attorneys for children should also be aware that IQ can be a misleading factor. Many children who have an FASD can still have an IQ higher than 70.


In addition to looking for evidence of an FASD through your client’s own actions and history, many, if not most, children born with FASDs have mothers who are alcoholics. It is also worth noting that the mothers may have an FASD as well. Obtaining information about the mother’s alcohol history during pregnancy can be difficult because it inherently includes an element of blame. The webinar discussion included many concrete examples of how to approach a mother in an interview, including an emphasis on the fact that, by giving information, the mother can ultimately help her child by providing the basis for a proper diagnosis and services for the child. Interviewing the mother will also be difficult in a child welfare case, as the mother’s counsel needs to be present and the information disclosed might be used against her in the case.


If a mother will not or cannot be interviewed, counsel should seek records that support evidence of alcohol exposure during gestation. Attorneys may also interview friends and family to find anecdotal information to support a diagnosis.


One scenario that could occur in the area of adoption results from parents adopting a child with an undiagnosed FASD. When the child exhibits difficult behaviors, the parents may be instructed with a standard set of parenting responses to those behaviors. Unfortunately, the standard responses are often ineffective for a child with an FASD. This may lead to the adoptive parents being labeled “bad parents.” More importantly, the adopted child is not being diagnosed and is therefore not receiving the proper services needed. Practitioners in this area should look for this set of circumstances and advocate for an evaluation to obtain a diagnosis and treatment.


How to Advocate for an FASD Evaluation
To secure support for testing and evaluating a child for an FASD, counsel may first have to educate the court or parties involved. One panelist indicated he includes a history of the syndrome in all of his written applications to the court.


Advocates must compile evidence of drinking during the gestation period. This evidence may come from interviews with the mother, interviews with friends and family, and medical, birth, or psychological records.


As indicated above, interviews with mothers could be very delicate. It may be advisable to have this interview conducted by a social worker or someone else with specialized experience. If the mother is represented by counsel, then, of course, counsel will need to be present for the interview. Interview pointers include the following:


  • State that you are trying to get information that will help the mother’s child.
  • Ask about the drinking habits of other family members first.
  • Ask how much someone drinks, not if they drink.
  • Break down the consumption questions into three time periods: before the mother was pregnant (with statements like “many people drink while they are pregnant because they don’t know they are pregnant”), before the mother learned she was pregnant, and after the mother learned she was pregnant.
  • Get the interviewee’s definition of what a “drink” is, including what type of drink is consumed and how large she considers an average drink to be.
  • Try not to ask yes/no questions.

 

How to Advocate after a Positive Diagnosis
Once again, education is important. The court should be provided information to allow for an understanding of the disorder as well as the fact that there is no cure.


Understanding FASDs and their effects on child clients, as well as the adults in their lives or even witnesses or victims who may be testifying in their cases, is incredibly relevant in the area of juvenile delinquency. Respondents may have arguments to suppress evidence or mitigate sentencing that need to be asserted on their behalf. In the context of delinquency, it is imperative to look at the child’s records and prior history with court involvement. The webinar discussion pointed out that prosecutors will most likely have your client’s past history and present it to the court with an eye toward seeking increased punishments and possibly requesting aggravated circumstances. Prior to that occurring, attorneys for delinquency clients must obtain and review the child’s records, taking into account the FASD diagnosis, to seek leniency and to support mitigating circumstances. Counsel should find the nexus between the FASD and the behavior of which the child was accused, both present and past. Attorneys are warned that failure to do so could amount to ineffective assistance of counsel.


In all practice areas, advocates should look at the state laws in the relevant jurisdiction. In some states, such as Minnesota and Alaska, FASDs are included in the definition of a “developmental disability.” Therefore, with the FASD diagnosis, you are legally entitled to the same level of services as for any other developmental disability, and you will have a basis to get those services provided to a client immediately. Other states do not include the specific terminology but do include brain injury or mental retardation in the definition of a developmental disability. Counsel can argue that an FASD diagnosis comes within this or similar terminology.


Once an entitlement or authorization to provide services exists, there are various kinds of services that may be requested. Overall, children with an FASD benefit from structure and strong support systems. They often thrive with simple, concrete rules. Some can benefit from medication. Services should foster identification of the child’s talents and then build on those talents and successes. For example, children with an FASD can be very talented in art or music. With the proper support and services, children can successfully graduate, work, and live independently, despite the diagnosis.


In any judgments or orders affecting children, counsel should consider including language indicating the child’s diagnosis, what that diagnosis means, and what the child is entitled to as a result of that diagnosis. Sometimes service providers for children do not receive adequate information to allow them to understand the diagnosis, the treatment, or both. Putting your client’s needs and entitlements in written documents that are sure to reach the providers helps to ensure proper treatment.


Where Can You Turn If You Need Additional Help?
The program faculty included various experts in this area with helpful suggestions of where to go for more assistance if and when you find yourself facing this issue in practice.


Kathy Mitchell is the vice president of the National Organization for Fetal Alcohol Syndrome in Washington, D.C. Her organization maintains a national resource directory for information located at its website, which lists diagnostic centers, parent support information and resources, disability organization contact information, and support services and information for birth mothers to assist with prevention. She suggested that if you do not find the information you need by accessing the website, practitioners should feel free to email the organization directly.


Hon. Anthony P. Wartnik (retired) is the legal director of FASD Experts in Mercer Island, Washington. That organization provides experts who are available to testify. That organization is responsible for the FASD Experts Screening Questionnaire referenced above.


The panel also included Dr. Pi Nan Chang, founder director emeritus of Pediatric Psychology from the Department of Pediatrics at the University of Minnesota and Billy Edwards from the Los Angeles County Deputy Public Defender in Los Angeles, California. Melodee Hanes, acting administrator of the Office of Juvenile Justice and Delinquency Prevention in Washington, D.C., served as the moderator.


Conclusion
In all areas of practice affecting children, failure to identify this possible diagnosis and follow through with testing and advocacy can lead to claims of ineffective assistance of counsel. More important, however, is that the failure to identify and address FASDs is also a failure to provide the afflicted children with the chance to receive the support systems they need to thrive to the best of their potential.


Synopsis of the Materials Included

  • FASD Legal Issues Case Law by Anthony P. Wartnick, Judge (retired). Judge Wartnik summarized case law from across the country on FASD issues, including the right to a diagnosis, sentencing, confessions, testimony from people with an FASD diagnosis, competency, diminished capacity, the vulnerability of victims diagnosed with FASD, ineffective assistance, educational rights, child welfare, and SSI.
  • Changing Public Policy with the Juvenile Courts: What Works? A brief outline/guide to what works in juvenile justice courts that includes the topics of assessment, education, and success.
  • Report to the House of Delegates with the proposed resolution that was considered at the August 2012 ABA Annual Meeting.
  • Fetal Alcohol Spectrum Disorders: Competency-Based Curriculum Development Guide for Medical and Allied Health Education and Practice, compiled by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, FASD Regional Training Centers, and the National Organization on Fetal Alcohol Syndrome (NOFAS).
  • FASD Birth Mother Interview. A 23-page FASD birth mother interview protocol.
  • FASD Screening Questionnaire.
  • One-page flyers from NOFAS, including FASD Prevention, FASD: What Everyone Should Know, FASD: What the Foster Care System Should Know, and FASD: What the Justice System Should Know.
  • FASD Experts Screening Questionnaire.
  • Presentation slides to accompany the webinar discussion.

Keywords: litigation, children’s rights, fetal alcohol spectrum disorders, fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorders


Teresa J. Grogan is the supervising attorney with the St. Vincent de Paul Legal Program’s Child Advocacy Clinic at St. John’s University School of Law in Queens, New York.


 
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