Taking the Next Step: Innovative Interventions for Fetal Alcohol Spectrum Disorders (FASDs) A Description of Conference Proceedings

Transcription

1 Taking the Next Step: Innovative Interventions for Fetal Alcohol Spectrum Disorders (FASDs) A Description of Conference Proceedings The second Marcus Autism Center Leadership Conference, entitled Taking the Next Step: Innovative Interventions for Fetal Alcohol Spectrum Disorders (FASDs), took place in Atlanta, Georgia, on October 21-23, The purpose of the conference was to bring leading researchers and clinicians in the FASD intervention field together to share information about successful evidence-based programs, to call attention to innovative programs in development, and to discuss dealing with challenges or problems often encountered in providing effective interventions. In addition, speakers with experience developing interventions for developmental disorders such as autism or ADHD were invited to share their expertise with those in the FASD field. The conference was sponsored by the Marcus Autism Center and the Emory University School of Medicine. Funding was provided by the Spray Foundation and the Centers for Disease Control and Prevention. The public relations department of Children s Healthcare of Atlanta (CHOA) provided in-kind donations including development of a conference brochure, a Save the Date card, and the graphic-logo used on all conference material. Conference Participants: There were 98 participants in the conference including 28 leaders in the intervention field and four speakers who have made contributions to research and development of interventions for developmental problems. Speakers were experts on interventions for autism spectrum disorder (ASD) and attention-deficit, hyperactivity disorder (ADHD), as well as biological interventions for FASDs and early intervention to support development of self-regulation in infants. The leaders were invited because they were currently involved in intervention development, were the recipients of new grants for intervention projects from CDC or NIAAA, or because they had experience operating clinics that treat FASDs. Policy-makers and representatives of advocacy groups such as National Organization on Fetal Alcohol Syndrome (NOFAS) also were invited to attend. A special effort was made to invite individuals working with underserved populations, such as adolescents and adults or infants, so they could share their knowledge and insights about working with these groups. The attendees included individuals from a variety of professional fields (e.g., psychologists, physicians, educators, therapists, nurses), representatives from state and federal government, volunteers, and parents of children with FASDs. Be the Solution! What We Can Learn from Others Experience Claire D. Coles, Ph.D. Dr. Coles began the conference by welcoming all the participants and discussing the purpose of the conference. She emphasized the unmet need for clinical and educational services and the lack of evidence-based intervention programs. In addition, the lack of financial resources has been critical in this area. The prevalence of FASDs is often presented as an iceberg, with those diagnosed with Fetal Alcohol Syndrome (FAS), the most severe form of FASD, represented by the tip. Prevalence of FAS is estimated at 1 per 1,000 births, while prevalence

2 of alcohol-related neurodevelopmental disorders (ARND), the least severe form, is estimated at 1 case per 100 births. Based on the birth statistics for the United States for 2009 (total births = 4,281,200), there were 4,281 children with FAS and 42,800 with ARND born in that year. Even given these rates of occurrence, FASD is likely to go unrecognized in many settings. Developmental, behavioral and educational problems are attributed to other causes. Historically, there has been little support for FASD-specific treatment programs or evidencebased interventions. Treatment has been dependent on availability defined by local laws and regulations. In the past decade, the situation has begun to improve. Research studies have been initiated in the U.S., Canada, and Western Europe in support of families and children affected by FASD. Public health agencies such as the Centers for Disease Control and Prevention (CDC) and the National Institute on Alcohol Abuse and Alcoholism (NIAAA), have begun supporting FASD intervention programs and evaluation. Currently, research is very limited in both the number and kind of studies undertaken. Some areas of intervention are completely unexplored. Controlled studies do suggest that targeted interventions improve outcomes. Affected individuals often respond to standard treatments that are adapted to their special needs. Dr. Coles summarized the goals for the conference as follows: 1) To bring together leaders working on interventions for FASD 2) To understand the range of activities in the field 3) To facilitate communication 4) To listen to experts from other areas of intervention research who can provide guidelines for the future 5) To consider the possibility of developing Standards of Care for FASD. Structure of the Conference Pre-conference sessions: There were four optional pre-conference sessions on interventions that have already been developed. These included the following: Improving Executive Functioning and Arousal Regulation in FASD (Julie Kable, Ph.D.) Games That Work: Using Technology to Improve Outcomes for FASD (Kimberly Kerns, Ph.D., and Claire D. Coles, Ph.D.) A Model for Math Intervention: Math Interactive Learning Experience (MILE) (Elles Taddeo, Ed.D.) Treating Sleep Problems Associated with FASD (Katrina Johnson, Ph.D.) Conference Sessions: The conference focused on several themes over the two-day series of presentations and panel discussions. What can we learn from interventions developed for other developmental disabilities? What do we know about developing programs for underserved populations Infants and young children? Adolescents? Adults?

3 What is the evidence for new interventions? How can clinical services be established effectively? Presentations by experts in the field were followed immediately by panel discussions including FASD researchers and clinicians. The discussants highlighted the points most relevant to FASD intervention and expanded the presentation by presenting their own perspectives on the intervention questions being considered. Interventions for other disabilities what can we learn? The conference included speakers who are experts in the treatment of other developmental disorders such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Several themes emerged in the discussion of evidence-based intervention programs. The importance of targeted intervention and evaluation through outcomes was clear in several presentations. Dr. Steven Evans, Co-Director of the Center for Intervention Research in Schools at Ohio University, emphasized the importance of specific interventions to deal with impairments associated with ADHD. Interventions to improve day-today organization skills (use of binders, tracking assignments) and understanding of the socialcognitive basis for successful social interactions (e.g., connections between cause and effect) are part of the program for middle-school students with ADHD. Increases in organization skills were related to improved school performance among students in the Evans program. Clancy Blair, Ph.D., Steinhardt School of Culture, Education and Human Development, New York University, discussed interventions for self-regulatory problems in his Tools of the Mind program for young children. Targeted physical, cognitive, and social regulation goals were developed and specific skills were introduced in the context of play or games. In both programs, problem behaviors were broken into skill components and interventions were developed to alter the component behaviors. While these interventions have been developed for other disorders, it is possible that some components may be adapted and targeted to impairments (often similar to those associated with ADHD and ASD) in individuals with FASDs. Effectiveness of interventions can be influenced by the context in which they are presented. Gary Mesibov, Ph.D., a Fellow with the Frank Porter Graham Child Development Institute at University of North Carolina at Chapel Hill, discussed Project TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren); both classroombased and home-based training are provided in the early intervention segment of this program. Dr. Evans also observed that, for ADHD, it s important to provide the intervention where the impairment is most likely to appear for ADHD, this is the school setting. In this way the intervention can be monitored by those providing it and modified if necessary. Both programs also provide consultation and training to teachers and other professionals in school systems; this consultation service is critical to developing school interventions. Project TEACCH, through its professional training program, has been the basis for autism intervention programs in many other states and countries. Both these programs also emphasize the importance of continuing interventions into adolescence and adulthood. Dr. Evans program was designed for middle-school students. The TEACCH program provides additional services, including a supported employment program, where adults with ASD can receive assistance in obtaining work and staying employed. They are currently developing PDA devices that adults with autism can use to help them with work and adaptive living skills with support from NIMH.

4 What do we know about developing programs for underserved populations? Infants? Adolescents and adults? The conference program highlighted a few intervention programs specifically designed for underserved populations. There are few programs available at this time for infants or for adolescents or adults with FASDs. In conjunction with Dr. Clancy Blair s presentation on early interventions for self-regulation, Dr. Blair Paley, Associate Clinical Professor in the David Geffen School of Medicine at the University of California, Los Angeles, discussed the SEEDS (Strategies for Enhancing Early Developmental Success) Program, developed to help foster and adoptive parents or caregivers improve parenting skills and parent-child interactions. The program is geared for children between the ages of 1 and 24 months. It includes parent education, an attachment-based parent training component to help parents understand infant cues and respond more sensitively, and participation in a music-oriented play group shown to be associated with improved parent-child interaction and self-regulation in young children. Dr. Paley noted that there were advantages to the group program such as decreased feelings of isolation among parents, increased sense of empowerment, and cost-effectiveness. Programs highlighted for adolescents and adults focused on developing adaptive adult behavior and coping with secondary disabilities. For adolescents, Dr. Mary J. O Connor, Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at UCLA, has initiated Project Step Up, a program to reduce alcohol consumption in teens. The program includes six weekly sessions where groups of adolescents and parents meet separately. Teen sessions focus on components from Project Options, such as alcohol expectancies and adaptive coping skills. The parent sessions center on monitoring teen behavior, modeling, and communication about alcohol. Dr. Leigh Tenkku, Assistant Professor, Department of Community and Family Medicine at the St. Louis University School of Medicine, has recently initiated an intervention to promote adaptive behavior in adults with FASDs. The program components include in-home family therapy, mentoring, and family services offered in person or online. The Parent-Child Assistance Program, developed by Therese Grant, Ph.D., Director of the Fetal Alcohol and Drug Unit at University of Washington School of Medicine, has been designed to promote positive parenting behavior among mothers at high risk for drinking, including mothers with FASDs. This multi-site study is based on a case-management approach and emphasizes decreasing drinking behavior, parent education, and development of healthy supportive networks. All programs target areas where individuals with FASDs are known to have difficulty; all program plans include measurement of outcomes to evaluate the effectiveness. Possibly, these efforts can form the basis for more far-reaching intervention efforts and programs. What is the evidence for new interventions? A session on new biological interventions suggests that choline, a nutrient that aids efficiency of cell and nervous system functioning, may reduce effects of prenatal alcohol exposure. Dr. Jennifer Thomas, Ph.D., Department of Psychology, San Diego State University, presented data on effects of choline on animals exposed to alcohol prenatally. She reported that choline is likely to influence development of the brain and decrease effects of prenatal alcohol exposure in areas such as spatial working memory and learning. Two studies with humans are now in progress to examine whether additional choline can mitigate prenatal alcohol effects. Dr.Christina Chambers, Ph.D., MPH, Department of Pediatrics and Family and Preventive medicine, University of California, San Diego, outlined the Ukraine CIFASD Clinical Project, a study in progress that is sponsored by the Collaborative Initiative on Fetal Alcohol

5 Spectrum Disorders. This study is currently underway and will investigate the impact of choline supplements for pregnant women on effects of prenatal alcohol use on offspring. Dr. Jeff Wozniak, Department of Psychology, University of Minnesota, has received funding for a study of effects of choline supplements on cognitive functioning in children exposed to alcohol prenatally. Findings from both studies will provide important new information on the effectiveness of biological intervention. How can clinical services be established effectively? A panel discussion on clinic issues included representatives from five clinic settings: Claire D. Coles, Ph.D., Marcus Autism Center, Fetal Alcohol and Drug Exposure Clinic, Atlanta, GA Susan Adubato, Ph.D., Northern New Jersey Fetal Alcohol Syndrome Diagnostic Center John H. Hannigan, Ph.D., FAStar-- Fetal Alcohol Syndrome Treatment & Referral Center, Detroit, MI Mary Jo Spencer, RN, CPNP, MPH, Minnesota Organization on Fetal Alcohol Syndrome (MOFAS), FASD Diagnosis Clinic Consortium (13 clinics across state) Susan Astley, Ph.D., Washington State Diagnosis & Prevention Network (participated by phone) Panel members discussed each clinical setting and provided information on referral sources for patients, composition of the clinic treatment team, demographic characteristics of the patient population, diagnostic issues, and cost/payment issues. Most clinics reported dealing with a large proportion of patients in adoptive or foster care and evaluating patients from infancy into adulthood. All clinics were staffed by an interdisciplinary team including a physician or other medical provider, psychologists, and social workers, as well as other professionals in some instances; this approach seemed to be effective. Issues discussed included variations in the diagnostic process, scheduling issues, billing problems, and adequacy of services for adult populations. Difficulty obtaining reimbursement for services is a major challenge for clinics represented by the panelists. Ms. Spencer reported that, in the Minnesota clinics, % of patients are on medical assistance such as Medicaid. Another area of concern is how to provide clinical services to adults with FASDs. Summary of Meeting: The conference allowed an exchange of ideas among leaders in the field of FASD intervention, researchers, other professionals, volunteers, and parents of children with FASDs. Evaluations completed by attendees and other more informal comments to the organizers suggest that the conference was a valuable experience for leaders and attendees alike. The audience found the presentations on successful interventions for other disorders helpful in considering new approaches to interventions for FASDs. Discussions of cutting-edge biological interventions as well as new programs for infants and adults with FASDs expanded the conference attendees knowledge base. Frank discussion of issues that make providing clinical care difficult also was informative; some commonality of experience emerged across clinic environments in this challenging field. In summary, the conference provided a valuable forum for discussion of

6 intervention approaches and challenges to providing clinical care. If funds can be obtained, we hope to provide additional conferences or meetings in the future to continue communication on development of interventions for FASDs.