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Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on March 19, 2013

The Interagency Autism Coordinating Committee (IACC) convened a conference call on Tuesday, March 19, 2013, from 10:00 a.m. to 11:33 a.m.

In accordance with Public Law 92-463, the meeting was open to the public. Thomas Insel, M.D., Chair, presided.

Participants:

Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, NIMH; Idil Abdull, Somali American Autism Foundation; Anshu Batra, M.D., Our Special Kids; Coleen Boyle, Ph.D., M.S.Hyg., Centers for Disease Control and Prevention (CDC); Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Autism Speaks; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany Farchione, M.D., Food and Drug Administration (FDA); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Donna Kimbark, Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL); David Mandell, Sc.D., University of Pennsylvania; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network; Robyn Schulhof, M.A., Health Resources and Services Administration (HRSA) (representing Laura Kavanagh); Alison Tepper Singer, M.B.A., Autism Science Foundation; Larry Wexler, Ed.D., U.S. Department of Education (ED)

Roll Call and Opening Remarks

Dr. Thomas Insel welcomed participants and noted that this meeting was being held to finish business from the January 29, 2013, meeting, particularly regarding the public comments received after that meeting.

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Approval of Draft Minutes for January 29, 2013

The Committee then voted unanimously to approve the minutes of the January 29, 2013 meeting, with two corrections, one by Ms. Lyn Redwood and one by Dr. Sally Burton-Hoyle.

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Discussion of Public Comments

Ms. Alison Singer said she wanted to focus on the comments from Ms. Amy Lutz, who is the parent of a 14-year-old son with autism, regarding aggression and self-injury among individuals with autism. She said that this is an underserved population with unique needs. She suggested that this group should be represented in the new iteration of the Strategic Plan, which does not currently their treatment, services, or quality-of-life needs. Ms. Singer also suggested that the Committee should invite an expert from a psychiatric behavioral clinic to speak to the committee. She said that Lee Wachtel, M.D., who is the Medical Director and Attending Child Psychiatrist at the Neurobehavioral Unit of the Kennedy Krieger Institute, would be a good choice to come and discuss this population and the treatment options that are available.

Mr. Scott Robertson added that there is a need to provide more education about psychiatric and mental health-related autism challenges, particularly as they relate to private psychiatric inpatient facilities. Ms. Redwood pointed out that it is important to investigate the potential for medical comorbidities as underlying reasons/culprits for self-injurious behaviors, particularly for nonverbal children. She said that many of these children often are found to have medical conditions such as severe esophagitis, gastroenteritis, and colitis; with the appropriate treatment, self-injurious behaviors may disappear. Ms. Redwood also expressed concern about the use of electroconvulsive therapy (ECT). She suggested that there may be long-term brain development sequelae associated with the use of ECT and also noted the need to understand the underlying pathology behind these behaviors. Ms. Redwood asked to invite experts to a future IACC meeting to address medical comorbidities and autism.

Dr. Insel suggested inviting Timothy Buie, M.D., a pediatric gastroenterologist at the Lurie Center for Autism at Massachusetts General Hospital, who treats children with autism spectrum disorder (ASD). Ms. Redwood suggested Arthur Krigsman, M.D., pediatrician and gastroenterologist, as a possible expert. She said that he has experience in treating individuals with ASD and gastrointestinal disorders. Dr. Geraldine Dawson suggested they could focus on issues such as self-injury, aggression, and medical comorbidities at the July 2013 IACC meeting. She said it might be helpful to have a panel of speakers to address these topics. Dr. Dawson added that Autism Speaks' Autism Treatment Network (ATN) is developing guidelines for medical comorbidities. Ms. Redwood noted that these issues have not been adequately addressed in the Strategic Plan and should be addressed by the Committee.

Dr. Insel suggested inviting James Perrin, M.D., outgoing President of the American Academy of Pediatrics, who has been actively addressing this issue, and a researcher from the Lewin Group who could share the results of the NIMH contract-funded Study of Health Outcomes in Children with Autism and Their Families, which looked at health outcomes in 33,000 children with autism whose medical records were accessible for research through a large managed health care organization. Dr. Insel said that the Committee should consider addressing these issues in more depth.

Ms. Sharon Lewis echoed Ms. Redwood's concern about the use of ECT. Ms. Idil Abdull said that nonverbal individuals with autism often are unable to express their wants and needs. She noted that it has been found that when these individuals are provided with a means of communicating—such as sign language or a device—their behaviors change and self-injury decreases. Ms. Lewis recommended inviting experts to speak about the nonverbal population. Mr. Robertson said that the Committee also should discuss sensory issues, sleep, and rest because aggression has been shown to be related to these. Dr. Insel noted that it seemed as if the Committee wanted to have a panel on nonverbal individuals and self-injurious behaviors.

Dr. Matthew Carey suggested inviting Clarissa Kripke, M.D., to be part of this panel at the next meeting. Dr. Kripke is a family medicine physician, Associate Clinical Professor of Family and Community Medicine, and the Director of the Office of Developmental Primary Care at the University of California, San Francisco. Dr. Insel asked members to send suggestions for speakers and panelists to Dr. Daniels.

Dr. Insel said that in the interest of better time management, the Committee should try to limit the number of people on this panel. This may mean that not all issues will be addressed to everyone's satisfaction. He suggested brief presentations by panelists/speakers followed by discussion among the panel members and the Committee.

Mr. Robertson brought up the public comments of Dena Gassner, M.S.W., Director of the Center for Understanding, and Advisory Board Member, Autism Society of America. She is a social worker who has presented on many of the issues facing women and girls with autism, which have not been addressed sufficiently in the literature. Mr. Robertson suggested that the Committee consider addressing this issue, possibly including it in the Strategic Plan as a health disparity.

Ms. Redwood mentioned the comments by parent advocate Dawn Loughborough and Emilio Ferrer, Ph.D., M.S., Professor in the Department of Psychology, University of California, Davis, who also discussed medical comorbidities. Committee members discussed including medical comorbidities, self-injury, and nonverbal autism in the same panel. Ms. Redwood said that Dr. Buie also could speak about some medical comorbidities. She highlighted the importance of understanding how some of these disorders can drive behavior, when those with ASD are unable to communicate their pain. Ms. Redwood pointed out the need to raise awareness among health care providers, so that they consider these issues when treating children with autism who display these behaviors. She also suggested that the Committee possibly develop guidelines regarding appropriate medical evaluation for individuals with autism, especially those who are nonverbal.

Dr. Donna Kimbark said that her preference would be to address the question of comorbid conditions as a separate issue. Ms. Redwood agreed that a separate focus is necessary for this topic. Mr. Robertson suggested addressing the state of the research regarding sensory issues at a later meeting. He noted that sensory issues were added to the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) diagnostic criteria. Dr. Insel said that a panel on sensory issues could be added to the agenda; however, the Committee would need to suggest possible panel members. He also noted that one of the new Autism Centers of Excellence is focusing on the question of sex differences and autism in girls.

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Discussion of and Vote on Coverage Letter

Dr. David Mandell noted that at the last meeting, the Committee had discussed a letter to the Secretary of Health and Human Services on the coverage of behavioral treatment. The Committee felt that a letter was a way to provide its recommendations about state coverage of behavioral treatments as part of their essential health benefits packages to be implemented under the Affordable Care Act. He said that this letter has the potential to be used at the state level to make decisions about which benefits to provide. In the letter, the Committee defined behavioral treatment and conveyed the urgency involved in the coverage of behavioral treatments for individuals with autism. Dr. Insel said that the two issues had driven the timing of presenting the letter to the entire IACC. First, it was felt that the Committee needed to act quickly because states soon would be determining coverage policies. IACC members also thought it was a good time to bring new information in the literature to the Secretary's attention. This information might influence decisions on coverage and essential health benefits.

Ms. Abdull emphasized the importance of both private and public coverage of these treatments. She said that the letter should stress the need for coverage and services for low-income children—who are disproportionately minorities—through Medicaid. Dr. Mandell suggested adding a sentence or two to address the lack of Medicaid and private insurance coverage for these treatments after the sentence about avoiding the creation of a two-tiered system for autism treatment. He added that there should be additional text about known income-based health care disparities. Dr. Insel noted that the first revision would be made in the paragraph beginning "roughly half the states." Text would be added to clarify that the essential health benefits discussed involve private insurance coverage; there is little information available about Medicaid plans. He said that a sentence would be added to note that currently there is no explicit service line in Medicaid to cover these types of early interventions for children with autism. He said the end of the letter would include a clarification that medical coverage should be available to both privately and publicly insured children to avoid the creation of a two-tiered system for autism care. Finally, material also would be added about the known disparities in access to care between these two systems. The Committee unanimously voted to accept the letter with these changes. The Committee also agreed that Dr. Mandell would make these changes and send the letter to Dr. Daniels. The letter then will be prepared and sent to Secretary Sebelius and also will be posted on the IACC website.

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Other IACC Business

Ms. Redwood asked for clarification on the action plan for addressing medical comorbidities. Dr. Insel said that it was his understanding that the Committee wanted to convene a panel of experts at a future IACC meeting on self-injury and nonverbal individuals with autism; this panel would include some discussion of medical comorbidities. However, he noted that several Committee members asked to have a more in-depth discussion of medical comorbidities; this discussion might take place at the next meeting or at a subsequent meeting. Ms. Redwood said that it was important to remember that the medical community already has addressed some of these comorbidity issues, whereas others have not. She stressed the importance of focusing on issues that are specific to autism, such as metabolic issues, immune system issues, and others. Ms. Redwood asked whether it would be possible to hold an IACC workshop on medical comorbidities. Dr. Insel commented that NICHD, NIMH, and the Special Olympics were in the process of planning a meeting on developmental disabilities to be held in September 2013. The focus of this meeting would be how to increase awareness of medical problems in the disability population. Dr. Insel suggested that the Committee could plan an event at this meeting that would focus specifically on autism. He added that the Committee also could plan another event focused solely on the needs of adults with ASD. Committee members agreed that there might be some issues that are unique to autism and that deserve special attention. Several Committee members agreed that the Committee should contact the planners of this meeting to find out how such topics could be integrated into the meeting. Dr. Walter Koroshetz said that the Committee could benefit from learning about other developmental conditions. Ms. Redwood expressed concern that there was not sufficient overlap between autism and other developmental disabilities with regard to medical comorbidities. She also expressed concern about waiting until fall 2013 to do this and not acting sooner.

After some discussion, Dr. Insel said that the July 2013 Committee meeting would be a good time to hear about comorbidities seen in the Study of Health Outcomes of Children with Autism and Their Families. He noted that there was some urgency in getting this information to pediatricians. As a result of this discussion, Committee members agreed that the July 2013 IACC meeting would include a panel to facilitate an in-depth discussion about self-injurious behaviors among individuals with autism, nonverbal individuals with autism, medical comorbidities associated with autism, and communication issues among people with autism. The Committee agreed that the panel would include representatives from ATN and The Lewin Group (which conducted and produced the Study of Health Outcomes of Children with Autism and Their Families) and experts on self-injurious behavior and treatment options available for psychiatric inpatients. In addition, the Committee will investigate working with the planners of the large September 2013 meeting on developmental disabilities. Ms. Singer and Ms. Redwood offered to help with both of these activities.

Dr. Insel thanked everyone for attending. Dr. Daniels reminded Committee members that the next IACC meeting would be April 9, 2013.

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Adjournment

Dr. Insel adjourned the conference call at 11:33 a.m.

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Certification

These minutes of the IACC Full Committee were approved by the Committee on April 9, 2013.

I hereby certify that this meeting summary is accurate and complete.

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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