Full Committee Meeting - April 19, 2018
Full Meeting Video
Photo Gallery
Announcement
| Topic | Topic Description |
|---|---|
| Date: | Thursday, April 19, 2018 |
| Time: | 9:00 a.m. to 5:00 p.m. Eastern |
| Place: | Bethesda Marriott Hotel 5151 Pooks Hill Road Bethesda, MD 20814 Self Parking is $16 daily with in/out privileges |
| Metro Stop: | Medical Center (Red Line) in combination with a 26 minute walk or short taxi ride; parking available at the hotel. |
| Registration: | Online Registration Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis. Onsite registration will also be available. For questions or problems with registration, please contact Celeste Pleasant from The Bizzell Group at 240-668-0302 or cpleasant@thebizzellgroup.com. |
| Remote Access: | Conference Call: Dial: 800-857-9791 Access code: 8959122 Webcast: https://videocast.nih.gov/summary.asp?live=27088&bhcp=1 If you experience technical problems with the webcast or conference call, please call 240-668-0302 or e-mail IACCPublicInquiries@mail.nih.gov. |
| Agenda: | To discuss business, updates, and issues related to ASD research and services activities. An agenda will be posted prior to the meeting. |
| Cost: | The meeting is free and open to the public. |
| Deadlines: | Notification of intent to present oral comments: Friday, April 6, 2018 by 5:00 p.m. ET Submission of written/electronic statement for oral comments: Tuesday, April 10, 2018 by 5:00 p.m. ET Submission of written comments: Tuesday, April 10, 2018 by 5:00 p.m. ET Please note: Written public comments and statements accompanying oral public comments should be sent to IACCPublicInquiries@mail.nih.gov. For IACC Public Comment guidelines please see:http://iacc.hhs.gov/meetings/public-comments/guidelines/ |
| Public Comment: | Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. ET on Friday, April 6, 2018 with their request to present oral comments at the meeting, and a written/electronic copy of the oral presentation/statement must be submitted by 5:00 p.m. ET on Tuesday, April 10, 2018.
A limited number of slots for oral comment are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2018). Only one representative of an organization will be allowed to present oral comments in any given meeting; other representatives of the same group may provide written comments. If the oral comment session is full, individuals who could not be accommodated are welcome to provide written comments instead. Comments to be read or presented in the meeting will be assigned a 3-5 minute time slot depending on the number of comments, but a longer version may be submitted in writing for the record. Commenters going beyond their allotted time in the meeting may be asked to conclude immediately in order to allow other comments and presentations to proceed on schedule. Any interested person may submit written public comments to the IACC prior to the meeting by e-mailing the comments to IACCPublicInquiries@mail.nih.gov or by submitting comments at the web link: https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp by 5:00 p.m. ET Tuesday, April 10, 2018. The comments should include the name, address, telephone number, and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. ET on Tuesday, April 10, 2018 will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. ET, April 10, 2018 deadline through April 17, 2018 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public 4 comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record. Attachments of copyrighted publications are not permitted, but web links or citations for any copyrighted works cited may be provided. Core Values: In the 2016-2017 IACC Strategic Plan, the IACC listed the "Spirit of Collaboration" as one of its core values, stating that, "We will treat others with respect, listen with open minds to the diverse views of people on the autism spectrum and their families, thoughtfully consider community input, and foster discussions where participants can comfortably offer opposing opinions.” In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement. |
| Please Note: | Remote Access: The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please call 240-668-0302 or e-mail IACCPublicInquiries@mail.nih.gov. Individuals wishing to participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least five days prior to the meeting. Security: Visitors will be asked to sign in and show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Meeting schedule subject to change. Information about the IACC is available on the website: https://iacc.hhs.gov. |
| Contact Person: | Ms. Angelice Mitrakas Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6183A Rockville, Maryland 20852 Phone: 301-435-9269 E-mail: IACCPublicInquiries@mail.nih.gov |
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Agenda
| Time | Event |
|---|---|
| 9:00 a.m. |
Joshua Gordon, M.D., Ph.D. Director, National Institute of Mental Health (NIMH) and Chair, IACC Susan Daniels, Ph.D. Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC |
| 9:10 |
Ann Wagner, Ph.D. HHS National Autism Coordinator and Chief, Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branch, Division of Translational Research, National Institute of Mental Health |
| 9:15 |
Scott Michael Robertson, Ph.D. Policy Advisor, Youth Policy Team, Office of Disability Employment Policy, U.S. Department of Labor Jose Velasco, M.S. Vice-President of Operations and Strategy, Global Co-Lead, Autism at Work, SAP Marjorie Madfis, M.B.A. Yes She Can, Inc. Lori Ireland, M.B.A. Co-Founder and Board Member, Extraordinary Ventures Paige Morrow Managing Director, Extraordinary Ventures |
| 11:00 |
Morning Break
|
| 11:15 |
Susan Daniels, Ph.D. Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC Joshua Gordon, M.D., Ph.D. Director, National Institute of Mental Health (NIMH) and Chair, IACC |
| 12:00 p.m. |
Lunch
|
| 1:00 |
Joshua Gordon, M.D., Ph.D. Director, National Institute of Mental Health (NIMH) and Chair, IACC Oni Celestin, Ph.D. Science Policy Analyst, Office of Autism Research Coordination, NIMH |
| 2:45 |
Matthew Siegel, M.D. Director, Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), Maine Medical Research Institute; Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare |
| 3:15 | |
| 4:00 |
Afternoon Break
|
| 4:15 |
Round Robin
|
| 5:00 |
Closing Remarks and Adjournment
|
Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/meetings/
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Minutes
- April Meeting Minutes (PDF 783KB)
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Speakers
Marjorie Madfis, M.B.A.
President, Executive Director, Yes She Can Inc.
Ms. Marjorie Madfis founded Yes She Can Inc. in November 2013, inspired by her daughter, Isabelle who is now a young woman with autism. Ms. Madfis realized that her daughter and other teens with autism transitioning from high school to the adult world need specialized coaching and training to be able to join the workforce. From her observations and experience with her daughter, she believed that people with autism particularly needed to have an immersive experience to prepare for the competitive work place: learning about business, executing tasks, and practicing social skills in an authentic setting. In her leadership role at Yes She Can, Ms. Madfis serves as the executive director, supervising the Girl AGain boutique manager, Director of Training Programs, and volunteers. She also is responsible for strategy, development, and communications. Previously, Ms. Madfis had a successful 30-year career in corporate marketing with expertise in branding, strategy, and interactive marketing. She holds an M.B.A. from Boston University and a B.S. from University of New Hampshire.
José Velasco, M.S.
Vice-President of Operations and Strategy, Global Co-Lead, Autism at Work, SAP
José Velasco is Vice-President of Operations and Strategy and is a Global Co-Lead for the Autism at Work program at SAP. During his tenure of almost 20 years at SAP, Mr. Velasco has occupied positions in product management, consulting, development, strategy, go-to-market and diversity functions. In 2016, Mr. Velasco launched the first Autism at Work Summit, a conference series designed to foster collaboration between private and public sectors, academia, government, schools, philanthropists, civil societies and the autism community with the ultimate purpose of improving opportunities for individuals with autism in the labor market. Mr. Velasco is a board member of The Arc. He holds a Masters Degree in Technology Commercialization from the University of Texas at Austin and B.S. in Computer Science from Tecnologico de Monterrey in Monterrey, Mexico.
Scott Michael Robertson, Ph.D.
Policy Advisor, Youth Policy Team, Office of Disability Employment Policy, U.S. Department of Labor
Dr. Scott Michael Robertson, an autistic adult, works as policy advisor on the Youth Policy Team at the U.S. Department of Labor’s Office of Disability Employment Policy. He previously worked as a Joseph P. Kennedy, Jr. Fellow for Senator Tom Harkin in the U.S. Senate Committee on Health, Education, Labor, and Pensions. Dr. Robertson has also served as a Public Member of the federal Interagency Autism Coordinating Committee and a Council Member on the Pennsylvania Developmental Disabilities Council. In 2006, he co-founded the Autistic Self Advocacy Network (ASAN) as a national 501(c)(3) nonprofit organization, and then served as the Founding Vice President. Dr. Robertson completed his Ph.D. in information sciences and technology at Penn State University after investigating cyber- and face-to-face bullying of autistic youth for his dissertation study.
Lori Ireland, M.B.A.
Co-Founder, Board Member, Extraordinary Ventures
Ms. Lori Ireland is a founding board member at Extraordinary Ventures. She is on the Autism Society of America Board of Directors, the UNC-Chapel Hill Board of Visitors, the CESA Advisory Board and the Arc Housing Board in Orange County, North Carolina. She was vice president of Capital Research Company and president of The Arc of Orange County and the local affiliate of the Autism Society of North Carolina. She was co-chair of the Advisory Board of FPG Child Development Institute and executive board member of The Educational Foundation and Rams Club (University of North Carolina, Chapel Hill). Ms. Ireland earned an M.B.A. from the University of California, Berkeley.
Paige Morrow, B.A.Sc.
Managing Director, Extraordinary Ventures
Ms. Paige Morrow is the Managing Director at Extraordinary Ventures. She has been with Extraordinary Ventures since 2012, and previously held the positions of Business Development Director and Operations and Finance Director. She earned her Bachelor of Applied Science in Health Promotion and Exercise Science from Appalachian State University.
Matthew Siegel, M.D.
Director, Autism & Developmental Disorders Inpatient Research Collaborative Faculty Scientist, Maine Medical Center Research Institute; Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare
Dr. Matthew Siegel is the Director of the Developmental Disorders Program of Spring Harbor Hospital and is actively researching and publishing in the area of autism and serious behavioral disturbance. He is a Clinical Investigator at the Maine Medical Center Research Institute, an assistant professor in the Department of Psychiatry of Tufts University School of Medicine, and the founder of a national inpatient research collaborative on children with autism and developmental disorders. Dr. Siegel serves on the Autism and Intellectual Disability Committee of the American Academy of Child and Adolescent Psychiatry. He is the PI for a multi-site phenotype-genotype study of children severely affected by autism that will examine relationships between phenotypic domains of communication, intelligence, psychiatric co-morbidity and corresponding genetic pathways. He attended Amherst College and Stanford Medical School and completed Triple Board Training at Brown University in child psychiatry, psychiatry and pediatrics.
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Materials
- Department of Labor – Office of Disability Employment Policy Website
- Extraordinary Ventures Website
- SAP Website
- Yes She Can Inc. Website
- Maine Medical Center Research Institute: Matthew S. Seigel, MD Profile
- McGuire K, Siegel M. Psychiatric hospital treatment of youth with autism spectrum disorder in the United States: needs, outcomes, and policy. Int Rev Psychiatry. 2018 Mar 14:1-6. doi: 10.1080/09540261.2018.1433134. PMID: 29537885
- Handen BL, Mazefsky CA, Gabriels RL, Pedersen KA, Wallace M, Siegel M; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Risk Factors for Self-injurious Behavior in an Inpatient Psychiatric Sample of Children with Autism Spectrum Disorder: A Naturalistic Observation Study. J Autism Dev Disord. 2018 Jan 24. doi: 10.1007/s10803-017-3460-2. PMID: 29368233
- Pedersen KA, Santangelo SL, Gabriels RL, Righi G, Erard M, Siegel M. Behavioral Outcomes of Specialized Psychiatric Hospitalization in the Autism Inpatient Collection (AIC): A Multisite Comparison. J Autism Dev Disord. 2017 Nov 23. doi: 10.1007/s10803-017-3366-z. PMID: 29170939
- Williams DL, Siegel M, Mazefsky CA; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Problem Behaviors in Autism Spectrum Disorder: Association with Verbal Ability and Adapting/Coping Skills. J Autism Dev Disord. 2017 Jun 8. doi: 10.1007/s10803-017-3179-0. PMID: 28597186
- Goodwin MS, Özdenizci O, Cumpanasoiu C, Tian P, Guo Y, Stedman A, Peura C, Mazefsky C, Siegel M, Erdoğmuş D, Ioannidis S. Predicting Imminent Aggression Onset in Minimally-Verbal Youth with Autism Spectrum Disorder Using Preceding Physiological Signals. PervasiveHealth2018. 2018 May.
- January - October (PDF – 573 KB)
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Public Comments
- Oral Public Comments (PDF – 1 MB)
- Written Public Comments (PDF – 1 MB)
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Slides
- IACC Meeting Full Slide Set (PDF 7MB)
| Presentation | Presenter(s) |
|---|---|
| Panel on Employment for People on the Autism Spectrum (PDF – 2 MB) |
Scott Michael Robertson, Ph.D. Policy Advisor, Youth Policy Team, Office of Disability Employment Policy, U.S. Department of Labor Jose Velasco, M.S. Vice-President of Operations and Strategy, Global Co-Lead, Autism at Work, SAP Marjorie Madfis, M.B.A. Yes She Can, Inc. Lori Ireland, M.B.A. Co-Founder and Board Member, Extraordinary Ventures Paige Morrow Managing Director, Extraordinary Ventures |
| Committee Business (PDF – 579 KB) |
Susan Daniels, Ph.D. Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC Joshua Gordon, M.D., Ph.D.Director, National Institute of Mental Health (NIMH) and Chair, IACC |
| Aggression and Self-Injury: Research Needs for the Severely Affected End of the Spectrum (PDF – 3 MB) | Matthew Siegel, M.D. Director, Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), Maine Medical Research Institute; Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare |
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Transcript
- Meeting Transcript (PDF – 596 KB)
