March 2009

• The MILE Program: Helping with Math Achievement and Behavior
• A Medical Student Addresses FASD Among Rural Women
• Canadians in Planning for Adult FASD Assessment Networks
• Submit an Article to Iceberg

The MILE Program: Helping with Math Achievement and Behavior

By Claire D. Coles, Ph.D
Julie A. Kable, Ph.D.
Elles Taddeo, EdD

Although Fetal Alcohol Syndrome and associated disorders were first described in 1973 (Jones & Smith), only recently has attention focused on finding effective intervention methods for affected children with commonly observed developmental, learning and behavior problems. Despite the significance of these problems for affected children, parents and society, it was assumed that little could be done to improve outcomes for this high-risk group. Both an inadequate understanding of children’s specific cognitive deficits as well as lack of data on the effects of intervention may have contributed to this assumption.

As part of a multi-site project funded by the Center for Disease Control and Prevention (CDC) to stimulate intervention research with alcohol-affected children, we developed a psychoeducational program to address functional deficits in cognition and behavior that are common in children with FASD. Although we could have targeted a number of different problem areas, we chose to focus on the behavior problems plus poor math learning and performance associated with alcohol-related neurodevelopmental deficits.

The program consists of several parts: 1) learning readiness, 2) parent empowerment, and 3) the Math Interactive Learning Experience (MILE). Children who participated in the initial evaluation of this program were recruited from the FAS Diagnostic Clinic at the Marcus Institute at the Emory University School of Medicine in Atlanta. They were between 3 and 10 years old, with an average age of 6 years, and had a diagnosis of FAS or partial FAS. To be included in the program children had to have an IQ higher than 50 and be living in a stable home for at least six months.

The main elements of the learning readiness component were parent training and any case management services (e.g., baby sitting, transportation, medication management) needed to create the conditions under which the child could benefit from appropriate instruction. To empower caregivers, education was provided in the form of workshops directed at two areas. The first involved caregiver advocacy training aimed to educate them about prenatal alcohol and drug exposures, explain how learning is affected, and inform them of the resources available to support education and intervention. The goal was to empower caregivers by improving their knowledge of their children’s development and by illustrating how to be positive partners with their community schools in their efforts to obtain needed resources for their children’s instruction. The second workshop educated caregivers regarding appropriate methods for management of children’s behavior and explained the importance of age-appropriate behavioral regulation skills that are needed to optimize learning experiences.

Eventually 61 families were included in the MILE intervention program. All of the children had a comprehensive evaluation of their academic skills and learning styles, and a learning plan was prepared. Half were randomly placed in the MILE intervention and half were in a contrast group.

Children in the MILE group received individualized one-on-one instruction weekly for 6 weeks based on their learning plan. Instruction was supported by a curriculum that used materials and methods designed to compensate for both the cognitive “dys-control” and the visual/spatial-based deficits in learning experienced by alcohol-affected children. To help with executive function deficits (dys-control) that interfere with learning and behavior relation, we used a meta-cognitive control technique, called FAR (Focus and Plan, Act, Reflect) during the instruction to teach the children to be more reflective in their problem-solving skills. To help with visual/spatial learning, we felt it was important that math concepts be visually experienced through physical exploration of objects and their relationships. For this reason we used manipulables (blocks, rods, seeds) that can be directly handled to teach number concepts; in addition, a vertical number line replaced the usual horizontal number line to emphasize that as numbers increase in size they go “up.”

Along with the intensive, short-term, individual instruction of the child, we provided training for caregivers and teachers to provide an overall integrated educational program. To support children’s learning and extend its influence, caretakers were provided with training on methods for incorporating mathematical concepts into free play and providing structured mathematical activities to their children. To ensure that the intervention was consistent across the environments, we offered coordination with the children’s school systems regarding teaching methodologies, including consultations with teachers, individualized educational plan development (as needed) and in-service workshops to teachers interested in learning about educating children who have alcohol-related neurodevelopmental compromise. The goal was to provide a consistent method of instruction of mathematical concepts across therapeutic, home and school environments.

After six weeks, families in MILE and in the contrast group were again tested to see whether the intervention was helpful. They were also tested six months later to record any longer-term effects of the intervention on learning and behavior. Parents in both groups, all of whom had received the workshop training, reported significantly improved behavior in their children. This observation was confirmed by the children’s teachers at the 6-month assessment. Improved behavior was noted particularly in the areas of attention problems and aggressive behavior. Those children who received the MILE intervention had significant improvements in math performance on standardized math tests and demonstrated improved handwriting. These gains were also found six months later.

Since this first study, we have developed training programs for teachers and are placing many of our materials online to allow parents and instructors easier access. We have carried out training in a number of special education and tutoring programs in the Atlanta area, and will be evaluating the results of this extension of the program in the coming year. The MILE program demonstrates that, in the right circumstances, children with FASD can demonstrate significant improvements in development and behavior. When methods are developed or adapted to accommodate the neurodevelopmental characteristics associated with prenatal alcohol exposure as well as the impact of postnatal environment, children are able to benefit significantly. We hope that having the evidence that such improvement is possible will empower parents and professionals to continue to advocate for early identification and appropriate education and treatment for children prenatally affected by alcohol.

The authors are from the Marcus Institute at the Emory University School of Medicine in Atlanta, Georgia.

References and Further Reading

Coles, CD, Kable, JA & Taddeo, E (2008, in revision) Math Performance and Behavior Problems in Children Affected by Prenatal Alcohol Exposure: Intervention and Follow-Up. Journal of Developmental and Behavioral Pediatrics.

Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973; 2: 989.

Kable, JA, Coles, CD, & Taddeo, E Socio-Cognitive Habilitation using the Math Interactive learning Experience (MILE) Program for Alcohol-Affected Children. Alcohol: Clin Exp Res. 2007; 31: 1425-143

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A Medical Student Addresses FASD Among Rural Women

By Gene Ryan Quinn

The University of Washington in Seattle has a strong commitment to the care of underserved rural areas in our geographically large region. As such, the university created a program to immerse medical students in underserved Northwest communities during the summer between their first and second years of school. The Rural/Underserved Opportunities Program (R/UOP) is a month-long program during which students work in a local family medicine clinic and complete a small public health project based on the identified health needs of the community. During the summer of 2006 I was sent to Plummer, Idaho – a small town of 990 on the Coeur D’Alene Indian Reservation of Northern Idaho. There the Benewah Medical Center, a clinic funded by the Indian Health Service, serves both native and non-native populations covering a large geographical region. The population certainly qualified as both rural and underserved – as of 2000, one third of the patients were below 200% of the federal poverty guidelines and approximately 56% had no insurance.

It didn’t take long to identify FASD prevention as a worthwhile project in Plummer. Alcohol use is a widespread problem in the area. Moreover, there is a high rate of teenagers and pre-teens engaging in high-risk binge drinking and unprotected sex. It was almost commonplace for 13 to 15 year olds to visit the clinic and test positive for pregnancy while admitting recent substance abuse. These factors greatly increase the likelihood of alcohol-exposed pregnancies, reinforcing the need to implement prevention strategies.

Plummer is certainly not the only rural town dealing with the problems of alcohol abuse and teenage pregnancy. What makes Plummer highly qualified for FASD prevention is that it has an excellent clinic, a well developed health department, and a fantastic, dedicated medical staff with a true interest in the health of their community. The physicians at Benewah Clinic were very open to anything that could better serve their patient populations.

Changing patient health behavior is a difficult but vitally important part of clinical practice. Physician-delivered interventions must be quick, effective and easy to use. Motivational Interviewing (MI) is an empirically supported way to change patient behavior using brief interventions. MI is a patient-centered approach that empathetically encourages the patient to come to his or her own conclusion about behavior change. Open-ended questioning and summary statements are used to develop discrepancies between the patient’s current behaviors and their values or future goals. Resistance to change is explored using techniques such as reflective listening, pros and cons, and rules of importance (i.e., “On a scale of one to ten, how important is stopping drinking to you?”). Exploring resistance rather than confronting it avoids patient defensiveness and supports autonomy. One of the best parts of MI is that it is useful in modifying a wide variety of health-risk behaviors, making the investment of time to learn the technique worthwhile for providers. Since large portions of time in primary care practice are spent attempting to change patient behavior, offering MI as a validated tool makes it an easy sell to providers.

After a literature review and consultation with experts in the field I decided that an MI-based intervention would be most suited for FASD prevention in this community. Inspired by the work of Project CHOICES, I decided to take the previously validated approach of targeting two distinct groups: pregnant women and women who drink while using ineffective means of contraception. I synthesized techniques used in previously successful research studies into separate provider-delivered interventions for each group. I then organized them into an easy-to-follow flowchart (Figure 1, Figure 2) with examples of possible phrases to use. Community health providers from the Benewah clinic and neighboring community health center attended a 30-minute PowerPoint presentation in which I introduced FASD, explained MI techniques and distributed the flowcharts to each provider. In addition, I ordered updated and appropriate FASD patient education and community awareness materials from the Centers for Disease Control (CDC).

R/UOP participants doing community health projects have no human-subjects approval and therefore are not allowed to collect data of any sort. As such, I can’t document if the intervention is working or even if all of the doctors are using the approach. However, I can report that the providers in Plummer recognized alcohol-exposed pregnancies as a large problem and the information about FASD prevention and Motivational Interviewing was well-received. The project has also been given more attention than I thought it would – it was awarded the University Of Washington School Of Medicine’s Liu Bie Ju Endowed Fellowship for Excellence in Women’s Health, presented at the Western Student Medical Research Forum, and has allowed me to write this article in a well-respected FASD newsletter.

Meanwhile, Dr. Mary Barinaga – my then clinic preceptor in Plummer and now friend and mentor – assures me that she not only uses MI, but looks at contraceptive counseling a little differently. At the very least I’d like to think that FASD prevention is a little closer to the front of a few people’s minds – my own included.

Gene Quinn is a fourth year medical student at the University of Washington who plans to pursue a career in Internal Medicine. His interests include public health, evidence-based medicine and health behavior change.

Selected References

Emmons, K., & Rollnick, S. (2001). Motivational interviewing in health care settings: Opportunities and limitations. American Journal of Preventative Medicine, 20(1), 68-74.

Handmaker, N., & Wilbourne, M. (2001). Motivational interventions in prenatal clinics. Alcohol Research and Health, 25, 219-299.

Project CHOICES Intervention Research Group. (2003). Reducing the risk of alcohol-exposed pregnancies: A study of a motivational intervention in community settings. Pediatrics, 111, 1131-1135.

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Canadians in Planning for Adult FASD Assessment Networks

By Paul Connor, PhD

As described in the September 2007 issue of the Iceberg, there is a recognized need for adult diagnosis of FASD, as this population has been underserved. This was one of the reasons that I opened my clinic to assess adults and adolescents in the Seattle area. There are other practitioners in the United States that are offering assessment services for adults and late adolescents. However, all of these services have been developed in an ad hoc manner, establishing clinics in relative isolation. The Public Health Agency of Canada has somewhat different plans. They are attempting to develop widespread diagnostic clinics that use the same procedures from site to site, allowing for a much more standardized diagnostic approach. Thus, on November 18, 2008, experts in the field of assessment and diagnosis of children and adolescents and adults across Canada convened for a two-day conference in Edmonton, Alberta, to discuss how to develop standardized diagnostic clinics for adults suspected of FASD. I was honored to be asked to participate in the discussions as one of the few practitioners in the United States currently doing this kind of work.

On the first day of the meetings we discussed the experiences of the clinics in Canada currently diagnosing adults. Several questions were raised during this discussion:

• Does the capacity exist to add adult assessments to already established diagnostic clinics seeing children and adolescents?
• Is it practical to integrate the assessment services for adults into the programs for the younger clients or should they be established as separate clinics?
• Would the diagnostic team need to be different than it is for children?
• What professionals would be essential for an adult diagnosis?
• Would a psychologist/neuropsychologist and a medical doctor be all that is needed, or would we also need an occupational therapist, physical therapist and speech therapist?
• Would there need to be additional experts, such as those involved with the legal system or vocational counselors or others?
• Does a centralized team approach where the client is seen by all members of the team at the same time seem feasible, or would a more sequential approach where the client sees a series of practitioners over the course of weeks (based on the assessment needs for each individual case) be more appropriate?

We grappled with these interesting questions, and discussed pros and cons for each method. Because the ultimate goal is to develop a system-wide approach to the diagnosis of adults, standardization of procedures is very important so that data from one site is consistent with data from other sites. To this end, Dr. Sterling Clarren discussed the development of standardized intake and assessment forms that could then be entered into a centralized database both for future research purposes and to establish each service’s efficacy. This would be an extremely valuable addition to the field. This approach has been very effective with the Parent-Child Assistance Program (PCAP), originally developed at the University of Washington in Seattle and now spawned across the U.S. and Canada. They have established a centralized database where all data from the PCAP process is available. From this database, they have been able to establish the effectiveness of the services provided and use this data to justify to government agencies that the program is cost-effective and provides high quality services. Any governmentally organized services for the diagnosis of adults with FASD needs to show similar effectiveness in order to justify the money spent.

On the second day of the meetings, participants broke up into three smaller discussion groups. The first group was oriented toward individuals and groups who are considering or are already in the process of developing diagnostic clinics. This group discussed the practicalities of establishing clinics, development of teams of professionals, and the resources that are needed. The second group worked with existing clinics within the Alberta province to discuss how to create common data collection methods and move toward commonality in service provision. The third group consisted of practitioners and policymakers across Canada and the U.S. to discuss the policy issues that are involved in such a large systemic undertaking.

The meetings were very interesting and covered many good ideas. While no final consensus was developed at the end of the meeting, we met the meeting’s goal of beginning to develop a diagnostic process that is consistent across all sites. I wish Alberta and all of Canada the best in developing this process as it will have implications not only in their country but here in the U.S. and across the world.

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Submit an Article to Iceberg

Our goal at Iceberg is to publish current information impacting those with FASD, their families, caregivers and professionals. We strive to include a range of voices in our articles. If you have a compelling story to tell about FASD, please submit an article for our pages. Email it to iceberg_fas@yahoo.com with your article included as a Word attachment. We look forward to your contributions.

Thank you.