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Meeting Transcript 1 INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING WEDNESDAY, April 17, 2019 The full Interagency Autism Coordinating Committee (IACC) convened in Rockville, Maryland, at the Neuroscience Center, 6001 Executive Boulevard, Conference Rooms C and D at 9:00 a.m., Joshua Gordon, M.D., Ph.D., Chair, presiding. PRESENT: JOSHUA GORDON, M.D., Ph.D., Chair, IACC, Director, National Institute of Mental Health, (NIMH) SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH MELINDA BALDWIN, Ph.D., LCSW, Administration for Children and Families (ACF) JAMES BALL, Ed.D., B.C.B.A.-D, JB Autism Consulting (attended by phone) LESLIE CAPLAN, Ph.D., (representing Jennifer Johnson, Ed.D.) Administration for Community Living (ACL) JUDITH COOPER, Ph.D., National Institute on Deafness and other Communication Disorders (NIDCD) 2 PRESENT: (continued) SAMANTHA CRANE, J.D., Autistic Self Advocacy Network (ASAN) GERALDINE DAWSON, Ph.D., Duke University (attended by phone) TIFFANY FARCHIONE, M.D., U.S. Food and Drug Administration (FDA) ELAINE COHEN HUBAL, Ph.D., (on behalf of Environmental Protection Agency (EPA)), EPA (attended by phone) ALICE KAU, Ph.D., (representing Diana Bianchi, M.D.) Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD) LAURA KAVANAGH M.P.P., Health Resources and Services Administration (HRSA) WALTER KOROSHETZ, M.D., National Institute of Neurological Disorders and Stroke (NINDS) CINDY LAWLER, Ph.D., (representing Linda Birnbaum, Ph.D.) National Institute of Environmental Health Sciences (NIEHS) DAVID MANDELL, Sc.D., University of Pennsylvania EDLYN PEÑA, Ph.D., California Lutheran University (attended by phone) LAURA PINCOCK, Pharm.D., M.P.H., Agency for Healthcare Research and Quality (AHRQ) (attended by phone) 3 PRESENT: (continued) LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative (SFARI) JOHN ELDER ROBISON, College of William and Mary MARCELLA RONYAK, Ph.D., L.C.S.W., C.D.P., Indian Health Services (IHS) NINA SCHOR, M.D., Ph.D., (representing Walter Koroshetz, M.D.) National Institute of Neurological Disorders and Stroke (NINDS) STUART SHAPIRA, M.D., Ph.D., Centers for Disease Control and Prevention (CDC) ALISON TEPPER SINGER, M.B.A., Autism Science Foundation (ASF) JULIE LOUNDS TAYLOR, Ph.D., Vanderbilt University LARRY WEXLER, Ed.D., U.S. Department of Education (ED) CHERYL WILLIAMS, Social Security Administration (SSA) NICOLE WILLIAMS, Ph.D., U.S. Department of Defense (DoD) (attended by phone) 4 TABLE OF CONTENTS Welcome, Introductions, Roll Call, and 8 Approval of Minutes Joshua Gordon, MD, Ph.D., Director, NIMH, and Chair, IACC Susan Daniels, Ph.D., Director, OARC, NIMH, and Executive Secretary, IACC Expect More: An Autism Adventure 15 The Hon. Mike Lake, P.C., M.P. Discussion 29 CDC Autism Data Visualization Platform 46 Stuart Shapira, M.D., Ph.D. Chief Medical Officer and Associate Director for Science, National Center on Birth Defects and Developmental Disabilities (NCBDDD), CDC Discussion 61 Update from the Federal Communications Commission 91 Theodore Marcus, J.D. Deputy Chief, Disability Rights Office, Consumer and Governmental Affairs Bureau, Federal Communications Commission (FCC) Discussion 123 5 Committee Business 133 Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC Joshua Gordon, M.D., Ph.D., Director, NIMH and Chair, IACC Public Comment Session 177 Joshua Gordon, M.D., Ph.D., Director, NIMH and Chair, IACC Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC Oni Celestin, Ph.D., Science Policy Analyst, OARC, NIMH Oral Commenters Lisa Wiederlight 177 W. John Martin, M.D., Ph.D. 185 Panel Presentation: Disability Employment 234 Employment: Current Research and Future Directions 233 Julie Taylor, Ph.D. Associate Professor of Pediatrics, Vanderbilt Kennedy Center Investigator, Vanderbilt University Medical Center 6 Competitive Employment for Youth with Significant Autism: A Multi-Site, Randomized Clinical Trial 259 Paul Wehman, Ph.D. Professor of Physical Medicine and Rehabilitation, Chairman Division of Rehabilitation Research, Director of VCU-RRTC, Medical College of Virginia, Virginia Commonwealth University The TennesseeWorks Collaborative: Lessons Learned on Elevating Employment Outcomes for Young People with Disabilities 269 Erik Carter, Ph.D. Cornelius Vanderbilt Professor of Special Education, Vanderbilt University Autism-Ready Workplace: Creating and Scaling Autism Hiring Initiatives 294 Hala Annabi, Ph.D. Associate Professor, Information School, University of Washington Discussion 323 Report from the HHS National Autism Coordinator 367 Ann Wagner, Ph.D. Chief, Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branch, Division of Translational Research, NIMH 7 Summary of Advances Discussion 375 Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC Joshua Gordon, M.D., Ph.D., Director NIMH and Chair, IACC Round Robin 394 Closing Remarks and Adjournment 403 8 PROCEEDINGS DR. JOSHUA GORDON: Thank you very much everyone here in the room, members of the coordinating committee and members of the public and others joining us through the web. Welcome to the Meeting of the Interagency Autism Coordinating Committee that takes place every April during Autism Awareness Month. We are really pleased to have you here today and we have what we hope is an exciting agenda for you. We are going to hear from the CDC. We are going to hear from our friends to the North, who might be hopefully not telling us that winter is coming. We are going to hear from the FCC, a new contribution of the IACC. And we are going to have a panel presentation in the afternoon on disability employment and we are also going to hear from our National Autism Coordinator later and have a bunch of committee business to take 9 and of course public comments. It is a full day. We are glad to have you. With that, I will turn it over to – actually, before I turn it over, we will remind people that the live feedback link is open for public comment. If you give us your public comments this morning, then we will add them to the comment report out during the public comment session in the early afternoon. With that, I will turn it over to Susan Daniels for roll call, minutes, et cetera. DR. SUSAN DANIELS: Great. Yes. And the live feedback will be open until before the public comment period. So it won't be open in the afternoon. So anyone who would like to get your comments in, feel free to do that. We also wanted to just let you know because there were questions in previous meetings, we are offering CART today. There 10 is a quiet room to the side of this room. There is closed captioning on the videos. There always has been and other accommodations available. Please let us know if there are any other needs that need to be fulfilled. Right now, we are going to go ahead and take a roll call. Starting with Josh Gordon. DR. GORDON: Here. DR. DANIELS: Judith Cooper. DR. JUDITH COOPER: Here. DR. DANIELS: Alice Kau for Diana Bianchi. DR. ALICE KAU: Here. DR. DANIELS: Cindy Lawler for Linda Birnbaum. DR. CINDY LAWLER: Here. DR. DANIELS: Carrie Wolinetz for Francis Collins. Elaine Hubal. Tiffany Farchione is here but had to step out. Melissa Harris or 11 Marguerite Schervish. I believe Melissa Harris is joining us later by phone. Jennifer Johnson or Leslie Caplan. DR. LESLIE CAPLAN: Here. DR. DANIELS: Laura Kavanagh. MS. LAURA KAVANAUGH: Here. DR. DANIELS: Walter Koroshetz. DR. NINA SCHOR: Dr. Koroshetz will be joining this afternoon. DR. DANIELS: Nina Schor. Great. Laura Pincock. DR. LAURA PINCOCK: Here. DR. DANIELS: Thank you. Marcy Ronyak. DR. RONYAK: Here. DR. DANIELS: Stuart Shapira. DR. STUART SHAPIRA: Here. DR. DANIELS: Melissa Spencer is now gone. Representative from the Social Security Administration. If you are representing the Social Security Administration, you can be up 12 at the table so our folks can help you get seated. Larry Wexler. DR. LARRY WEXLER: Here. DR. DANIELS: Nicole Williams. DR. NICOLE WILLIAMS: I am here on the phone. DR. DANIELS: Melinda Baldwin. David Amaral is not here today. Jim Ball on the phone. DR. JAMES BALL: Yes, I am here on the phone. DR. DANIELS: Thank you. Samantha Crane, I think, is going to be here today later maybe. Geri Dawson, are you by phone. DR. GERI DAWSON: I am here by phone. Sorry I can't join you in person. My flight was messed up this morning. DR. DANIELS: Thanks for joining us by phone. David Mandell. DR. DAVID MANDELL: Here. 13 DR. DANIELS: Kevin Pelphrey, I think, is not going to be here today. Edlyn Peña is going to be with us by phone. DR. EDLYN PEÑA: I am here. Good morning. DR. DANIELS: Louis Reichardt. DR. LOUIS REICHARDT: Here. DR. DANIELS: Rob Ring. Are you on the phone? John Elder Robison. MR. JOHN ELDER ROBISON: Yes. I am here. DR. DANIELS: Alison Singer. MS. ALLISON SINGER: I am here. DR. DANIELS: Julie Taylor. DR. JULIE TAYLOR: Here. DR. DANIELS: Okay. So we're done with the roll call. Now, we can take a moment to look over the minutes from the last meeting. Does anyone have any questions or concerns or comments about the minutes? Would anyone like to make a motion to accept the minutes? 14 MR. ROBISON: I will move to accept them. DR. DANIELS: Is there a second? DR. REICHARDT: Second. DR. DANIELS: All in favor of accepting the minutes as written say I? Anyone opposed? Does anyone wish to abstain? It sounds like unanimous move to go ahead and accept these minutes. We will post them to the website after the meeting. Thank you. DR. GORDON: The first item on our agenda we have a special guest this morning we are very pleased to have from Canada, a member of the Canadian Member of Parliament, the Honorable Mike Lake.
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