Full Committee Meeting - July 26, 2017
Full Webcast
Photo Gallery
Announcement
| Topic | Topic Description |
|---|---|
| Date: | Wednesday, July 26, 2017 |
| Time: | 9:00 a.m. to 5:00 p.m. Eastern |
| Place: | National Institutes of Health 31 Center Drive Building 31, C Wing, 6th Floor, Conference Room 6 Bethesda, MD 20892 |
| Metro Stop: | Medical Center Metro Station (Red Line) |
| Remote Access: | Conference Call: Dial: 888-323-2720 Access code: 8420867 Webcast: https://videocast.nih.gov/summary.asp?live=21741 If you experience technical problems with the webcast or conference call, please call 240-668-0302 or e-mail IACCPublicInquiries@mail.nih.gov. |
| Registration: | Online 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. |
| Agenda: | To discuss business, updates, and issues related to ASD research and services activities. The Committee will discuss updates of the IACC Strategic Plan. |
| Cost: | The meeting is free and open to the public. |
| Deadlines: | Notification of intent to present oral comments: Friday, July 14, 2017 by 5:00 p.m. ET Submission of written/electronic statement for oral comments: Tuesday, July 18, 2017 by 5:00 p.m. ET Submission of written comments: Tuesday, July 18, 2017 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, July 14, 2017, 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, July 18, 2017.
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 (2017). 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 will be assigned a time slot of 3-5 minutes depending on the number of comments, but a longer version may be submitted in writing for the record. Commenters going beyond the 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 on Tuesday, July 18, 2017. 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, July 18, 2017 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, July 18, 2017 deadline through July 25, 2017 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 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 2009 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 to diverse views with open minds, discuss submitted public comments, 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 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: In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs and hotel and airport shuttles, will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID 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: http://www.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 |
Thomas Novotny, M.D. Deputy Assistant Secretary for Health and National Autism Coordinator Department of Health and Human Services |
| 9:15 |
Lori McIlwain Co-Founder and Board Chair |
| 9:45 |
Paul Lipkin, M.D. Director |
| 10:15 |
Committee Discussion of Wandering Presentations
|
| 10:45 |
Morning Break
|
| 11:00 |
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 - Building 31 Cafeteria
|
| 1:00 |
Joshua Gordon, M.D., Ph.D. Director, National Institute of Mental Health (NIMH) and Chair, IACC Karen Mowrer, Ph.D. Science Policy Analyst, Office of Autism Research Coordination, NIMH |
| 2:15 |
JaLynn Prince Adrienne McBride Desiree Kameka Director of Community Education & Advocacy |
| 2:45 |
Committee Discussion
|
| 3:15 |
Afternoon Break
|
| 3:30 |
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 |
| 4:00 |
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/iacc-meetings/
Next IACC Full Committee Meeting:
- October 24, 2017 – Neuroscience Center, 6001 Executive Boulevard, Rockville, MD
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Minutes
- July Meeting Minutes (PDF 732KB)
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Speakers
Lori McIlwain
Co-Founder and Board Chair, National Autism Association
Ms. Lori McIlwain is the Co-Founder and Chairperson of the Board at the National Autism Foundation. In 2012, Ms. McIlwain assisted the National Center for Missing & Exploited Children in creating federal search and rescue guidelines for missing children with special needs. In 2007 she began advocating for federal resources that would reduce and eliminate injuries and deaths associated with autism-related wandering. She has been a contributor in New York Times, and featured in USA Today, Time, WebMD, Education Week, FBI’s National Academy Associate Magazine and on NPR.
Paul Lipkin, M.D.
Director, Interactive Autism Network
Dr. Paul Lipkin is the Director of Medical Informatics and the Interactive Autism Network (IAN) at Kennedy Krieger Institute (KKI). He is also co-Principal Investigator with other faculty on incorporation of IAN into the National Patient-Centered Clinical Research Network. Dr. Lipkin’s clinical and research career focused on the early identification, evaluation, and treatment of children and adolescents with developmental disabilities, including autism, learning, and attention disorders. Funding includes support from the Centers for Disease Control and Prevention and the National Institutes of Health. Dr. Lipkin is also an Associate Professor of Pediatrics at the Johns Hopkins School of Medicine and provides clinical services in the Center for Development and Learning at the Institute. He joined the faculty of the KKI and Johns Hopkins University in 1995. Dr. Lipkin has provided national leadership on children with special health care needs and disabilities, through his work with the American Academy of Pediatrics (AAP), where he served as Chair of its Council on Children with Disabilities from 2002- 2007. He remains active in key AAP initiatives, including its guidelines on developmental and autism screening and implementation of Individuals with Disabilities Education Act. Dr. Lipkin served as a Robert Wood Johnson Foundation Health Policy Fellow in 2010-2011, working in the Office of the Secretary of Health and Human Services Kathleen Sebelius. Dr. Lipkin received his undergraduate degree from Rutgers University and attended medical school at Rutgers- New Jersey Medical School.
JaLynn Prince
President and Founder, Madison House Autism Foundation
JaLynn Prince is Co-Founder and President of Madison House Autism Foundation (MHAF), one of the first and only organizations in this country working exclusively on the issues facing adults on the autism spectrum. She works on nationwide topics of housing, employment, education, awareness, medical services, safety, concerns involving individuals on the spectrum, and matters confronting family members dealing with autism. The foundation was recently gifted a 400-acre farm in Montgomery County, Maryland, which is serving as an inclusive place for workforce development, respite, therapeutic riding, agricultural involvement and, eventually, housing for adults on the autism spectrum. Additionally, she is a member of the Royal Academy of Medicine and is one of the authors of Autism Spectrum Disorder in Mid and Later Life. She serves on advisory boards of universities and has spoken nationally and internationally about the issues confronting families dealing with autism. Prior to the creation of MHAF, Mrs. Prince worked in broadcasting, management consulting, as a press secretary on Capitol Hill, public relations, community development, and as an arts administrator. Her son Madison, 27, is on the autism spectrum.
Adrienne McBride
Executive Director, Madison House Autism Foundation
Adrienne McBride oversees all aspects of the Madison House Autism Foundation. Her focus is overall strategic and operational responsibility for Madison House’s staff, programs, and mission. Currently, Adrienne serves as a Board Director for the League of Women Voters-Montgomery County and is active on the Education, Budget and Fundraising Committees. She chairs its Montgomery County Budget Process review committee and is a longtime volunteer for Holy Cross Home Care and Hospice. Previously Ms. McBride worked for Silver Spring Community Vision and Shepherd’s Table to help address the issue of homelessness in Montgomery County and pursue a career in nonprofits. Later, she held a director position at the Universities at Shady Grove for the University of Maryland. Ms. McBride received her bachelor’s degree from Fairfield University, CT and a Masters of International Business Management (Marketing).
Desiree Kameka
Director of Community Education & Advocacy, Madison House Autism Foundation
Desiree Kameka’s work for the Madison House Autism Foundation focuses on researching housing issues; advocating with organizations, families, and autistic adults on housing issues; and presenting at local and national gatherings. She visits many residential communities and social enterprises across the USA and abroad in order to highlight their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Ms. Kameka is also the project lead for Madison House’s interactive Autism Housing Network. Her undergraduate degree is from the University of Miami in psychology, emphasizing psychobiology, with a minor in psychological and educational studies. She earned her master’s degree in theological studies from Wesley Theological Seminary in Washington, DC as well as a post-graduate certificate in Ecumenism from the Washington Theological Consortium. Her work analyzing autism through a theological lens has brought her international recognition as she worked with the World Council of Churches initiative of the Ecumenical Disability Advocates Network and the World Student Christian Association.
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Materials
IACC Business Related Materials:
- Agenda (PDF – 57 KB)
- IACC Roster
- Oral Public Comments (PDF – 406 KB)
- Written Public Comments (PDF – 644 KB)
- IACC Strategic Plan Chapter and Section Drafts:
- Introduction (PDF – 294 KB)
- Vision, Mission, and Core Values Statement (PDF – 263 KB)
- Overview of ASD Research Funding Progress (PDF – 289 KB)
- Question 1 - Screening and Diagnosis (PDF – 511 KB)
- Question 2 - Underlying Biology of ASD (PDF – 535 KB)
- Question 3 - Risk Factors (PDF – 548 KB)
- Question 4 - Interventions (PDF – 598 KB)
- Question 5 - Services (PDF – 425 KB)
- Question 6 - Lifespan (PDF – 823 KB)
- Question 7 - Infrastructure, Surveillance, Workforce, Outreach (PDF – 359 KB)
- Duplication of Effort Statement (PDF – 188 KB)
- Budget Recommendation: Narrative (PDF – 282 KB) | Slides (PDF – 504 KB)
- Conclusion (PDF – 266 KB)
- 2017 IACC Summary of Advances Nominations (PDF – 482 KB)
- Speaker Bios (PDF – 241 KB)
Materials related to presentations:
- Materials related to National Autism Association’s Presentation:
- Materials related to Interactive Autism Network’s Presentation:
- Interactive Autism Network (IAN) Home Page
- 2011 IAN Research Report – Elopement and Wandering
- Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, Law PA. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. 2012 Nov; 130(5): 870–877. Epub 2012 Oct 8. PMID: 23045563
- Kiely B, Migdal TR, Vettam S, Adesman A. Prevalence and Correlates of Elopement in a Nationally Representative Sample of Children with Developmental Disabilities in the United States PLos One. 2016 Feb 4;11(2):e0148337. Epub 2016. PMID: 26845701
- Rice CE, Zablotsky B, Avila RM, Colpe LJ, Schieve LA, Pringle B, Blumberg SJ. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability. The Journal of Pediatrics. 2016 Jul;174:232-239.e2. Epub 2016 May 2. PMID: 27157446
- Barnard-Brak L, Richman DM, Moreno R. Predictors of Elopement Exhibited by School-Aged Children With Special Health Care Needs: Towards the Development of a Screening Instrument for Elopement. The Journal of Primary Prevention. 2016 Dec;37(6):543-554. PMID: 27699565
- Interactive Autism Network (IAN) Home Page
- Materials related to Madison House Autism Foundation’s Presentation:
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Slides
- IACC Meeting Full Slide Set (PDF 8MB)
| Presentation | Presenter(s) |
|---|---|
| Mortality & Risk in ASD Wandering/Elopement: 2011-2016 (PDF – 3 MB) | Lori McIlwain, Co-Founder and Board Chair, National Autism Association |
| Injury Prevention Strategies for Wandering in Families of Children with ASD (PDF – 943 KB) | Paul Lipkin, M.D., Director, Interactive Autism Network |
| Committee Business (PDF – 1 MB) | 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 |
| Autism After 21: Madison House Autism Foundation (PDF – 2 MB) | JaLynn Prince, President and Founder, Madison House Autism Foundation |
| Summary of Advances Discussion (PDF – 324 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 |
| ASD PEDS Network Meeting (PDF – 441 KB) | Denise Pintello, Ph.D., M.S.W.. Division of Services and Intervention Research, Chief, Child & Adolescent Services Research Program |
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Public Comments
- Oral Public Comments (PDF – 406 KB)
- Written Public Comments (PDF – 644 KB)
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Transcript
- Meeting Transcript (PDF – 404 KB)
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