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Meeting Transcript 1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE FULL COMMITTEE MEETING FRIDAY, MARCH 14, 2008 The Committee met in the Rotunda Room, 8th Floor, the Ronald Reagan Building, Washington, DC at 9:00 a.m., Thomas Insel, Chair, presiding. PRESENT: THOMAS R. INSEL, M.D., IACC Chair, National Institute of Mental Health ANN WAGNER, Ph.D., IACC Executive Secretary, National Institute of Mental Health DUANE F. ALEXANDER, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development JAMES F. BATTEY, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders ELLEN W. BLACKWELL, M.S.W., Centers for Medicare and Medicaid Services JEFF BUCK, Ph.D., Substance Abuse and Mental Health Services Administration (For Dr. Larke Huang) PETER VAN DYCK, M.D., M.P.H., Health Resources and Services Administration MARGARET GIANNINI, M.D., F.A.A.P., Office of Disability, U.S. Department of Health and Human Services LEE GROSSMAN, Autism Society of America PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 2 PRESENT (continued): GAILE R. HOULE, Ph.D., U.S. Department of Education YVETTE M. JANVIER, M.D., Children’s Specialized Hospital STORY LANDIS, Ph.D., National Institute of Neurological Disorders and Stroke CINDY LAWLER, Ph.D., National Institute of Environmental Health Sciences CHRISTINE McKEE, J.D. PATRICIA A. MORRISSEY, Ph.D., Administration for Children and Families LYN REDWOOD, R.N., M.S.N., Coalition for SafeMinds CATHERINE RICE, Ph.D., National Center on Birth Defects and Developmental Disabilities (For Dr. Edwin Trevathan) STEPHEN M.SHORE, Ed.D., Autism Spectrum Consulting ALISON TEPPER SINGER, M.B.A., Autism Speaks PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 3 TABLE OF CONTENTS Call to order and opening remarks Dr. Thomas Insel..................... 4 Introductions of IACC Members............... 6 Approval of November 30, 2007 Meeting Summary............................. 9 Discussion of Service Needs and Coordination for Autism Spectrum Disorder (ASD) Lee Grossman ......................... 11 Ellen Blackwell ...................... 19 Update on Strategic Planning Steps Joyce Chung, M.D. ................... 50 Group Discussion........................... 75 Strategic Plan: Mission, Vision, and Values Dr. Thomas Insel ..................... 96 Strategic Planning Process Going Forward Dr. Steve Foote ..................... 128 Public Comments Paula Durbin-Westby, Autistic Self- Advocacy Network .................... 194 Michael Frandsen .................... 198 Dena Gassner ........................ 201 Dena Gassner on behalf of Patrick Kelty ....................... 204 Sharrill Hemry ...................... 207 Katie Miller ........................ 211 Ari Ne’eman, Autistic Self- Advocacy Network .................... 216 Alexander Plank ..................... 221 Closing Comments and Future Agenda Items....................... 225 Adjournment............................... 227 PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 4 P R O C E E D I N G S [9:00 a.m.] DR. INSEL: Welcome to everyone to the second Interagency Autism Coordinating Committee meeting. It is nearly the Ides of March. It has been since November 30th when we had our first meeting, and a lot has happened in the interim. December was, of course, a huge month for autism genetics, with several major findings in the course of about three to four weeks in December. The month of January was a time when we saw a lot of research advances with the CADDRE sites moving into the field from CDC. I think many of you know that two of the big multi-site pharmacology efforts through the NIH ended up their work and are now in the data analysis period, with hopes of pulling all that together. Of course, these last couple of weeks have been rather extraordinary for autism with all the news about the Hannah Poling case and the interest, in the media especially, but the public generally about trying to understand this little girl's case of autism and its PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 5 relationship to vaccines and other events. So it has been a busy few months. A lot is happening. Among the many things that have been happening have been the work on the strategic plan, which we will come back to in a little while. We are going to use most of today's meeting really for two things. One is to revisit a discussion that we had at the first meeting about the role of services and the IACC. We want to look at that first. Then, after we have had that discussion, we are going to really enter into a much deeper conversation about the nature of the strategic plan and to think about where we are going with this and how you think we should move forward to get from where we are to where we need to be. We will have a presentation that will take you up to this point in terms of what has been done and then some discussion about ways that we can go forward. Before we start any of that, since we are still getting to know each other a bit, I thought it would be worth doing another round of introductions. So, maybe, Stephen, if you will start. Just say who you are and, if you represent someone, who you represent. We will just PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 6 go quickly around the room that way. Thanks. DR. SHORE: Stephen Shore. I just recently finished my doctoral dissertation on comparative approaches for treating children on the autism spectrum, with the goal of matching best practice to the needs of children with autism. My relation to autism; I am my own autistic child. I'm a board member of the ASA, National Chapter, and I travel around the world helping children with autism lead fulfilling and productive lives. Lee, you're on. MR. GROSSMAN: Thank you, Stephen. I can't follow that. I'm Lee Grossman. I'm president and CEO of the Autism Society of America. Most importantly, I am the father of a 20-year-old young man with autism. DR. BATTEY: I'm Jim Battey. I have been at NIH for 25 years. I'm currently the director of the National Institute on Deafness and Other Communication Disorders. DR. McKEE: I'm Christine McKee. I don't have any organizational affiliations. I'm a mother of an PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 7 eight-year-old girl with autism. DR. GIANNINI: I'm Peg Giannini. I'm the director of the Office on Disabilities for Secretary Leavitt and President Bush. DR. BUCK: I'm Jeff Buck. I'm here representing Larke Huang from the Substance Abuse and Mental Health Services Administration. DR. HOULE: I'm Gail Houle, and I'm with the Office of Special Education Programs, the U.S. Department of Education. DR. JANVIER: I'm Yvette Janvier. I'm a pediatrician. I'm board certified in developmental behavioral pediatrics and neurodevelopmental disabilities. I work in central New Jersey. I have a practice of over 1,000 children with autism. I'm one of the public members. DR. van DYCK: Good morning. Peter van Dyck. I'm director of the Maternal and Child Health Bureau in the Health Resources and Services Administration. MS. REDWOOD: Lyn Redwood. I'm with the Coalition for Safe Minds and also the National Autism Association. PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 8 MS. BLACKWELL: Ellen Blackwell. I'm with the Centers for Medicare and Medicaid Services, and I also have a 21-year-old son with autism. DR. LAWLER: Cindy Lawler. I'm a program director at the National Institute of Environmental Health Sciences and have responsibility for the Autism Program at our institute. DR. RICE: Hi. I'm Cathy Rice with the National Center on Birth Defects and Developmental Disabilities at CDC. I'm sitting in today for Dr. Ed Trevathan, and I work primarily on our autism surveillance projects. MS. SINGER: I'm Alison Singer. I'm executive vice president at Autism Speaks. I have a 10-year-old daughter with autism and a brother with autism, who turned 44 yesterday. DR. ALEXANDER: Good morning. I'm Duane Alexander. I'm a pediatrician and director of the National Institute of Child Health and Human Development at NIH. DR. WAGNER: I'm Ann Wagner from NIMH, and my role here is as exec sec of this Committee. PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 9 DR. INSEL: Welcome to everybody. I'm Tom Insel, the director of the NIMH and chair of the IACC. Our first order of business is to review the minutes from the first meeting. I will take comments, revisions, edits, concerns, and anything there. I think you should have received these ahead of time. [No response.] DR. INSEL: Hearing none, I will assume they are approved. Let's move on, then, to the first discussion, which has to do with picking up on a thread that we had from the first meeting. If you will recall, there was a fairly lengthy discussion at the first meeting about trying to find a balance between the research strategic plan, which is part of what the Combatting Autism Act called for, and the need that many people on the Committee felt for some attention to issues around services, which are also in the Combatting Autism Act but hadn't been included explicitly as part of the Autism Research Strategic Plan. We resolved that to some extent by saying there PERFORMANCE REPORTING Phone: 301.871.0010 Toll Free: 877.871.0010 10 are aspects of research which can inform services and that part of it should be incorporated into what we do with the strategic plan.
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