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IACC Full Committee Meeting

The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call. Close captioning is provided; for other disabilities accommodations see below.

meeting announcement Announcement

Topic Topic Description
Date: Wednesday, January 16, 2019
Time: 9:00 a.m. to 5:00 p.m. Eastern
Place: Hilton Washington DC/Rockville Hotel and Executive Meeting Center
1750 Rockville Pike
Rockville, MD 20852
Metro Stop: Twinbrook Metro Station (Red Line)
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. Register
Remote Access: Conference Call:
Dial: 888-829-8668
Access code: 1308901
Webcast: https://videocast.nih.gov/summary.asp?live=29099&bhcp=1
Members of the public who participate using the conference call phone number will be in listen-only mode. If you experience technical problems with the webcast or conference call, please call 240-668-0302 or e-mail IACCPublicInquiries@mail.nih.gov.
Cost: The meeting is free and open to the public.
Deadlines: Notification of intent to present oral comments: Friday, January 4, 2019 by 5:00 p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, January 8, 2019 by 5:00 p.m. ET

Submission of written comments: Tuesday, January 8, 2019 by 5:00 p.m. ET

Webcast live feedback comments: No pre-registration required. For more information, visit the Live Feedback page.

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 Comments: 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, January 4, 2019 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, January 8, 2019. Expand for more down arrow

A limited number of slots for oral comments 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 (2019). 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 link: https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp by 5:00 p.m. ET on Tuesday, January 8, 2019. 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, January 8, 2019, 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, January 8, 2019 deadline through January 16, 2019, 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.

Individuals may also submit public comments to the IACC via a Live Feedback Form accessible from the webcast page on the day of the meeting from 9:00 AM ET to 11:00 AM ET. No pre-registration required. The link will be accessible on the NIH Videocast website and instructions are available on the IACC website: https://iacc.hhs.gov/meetings/iacc-meetings/2019/full-committee-meeting/january16/live-feedback.shtml. This format is best suited for brief questions and comments for the committee. Submissions will be provided to the IACC and will become a part of the public record.

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 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.
Disability Accommodations: All IACC Full Meetings provide Closed Captioning through the NIH videocast website. Remote CART (Communication access real-time translation) will also be available at all meetings via a web application that can be used on a laptop computer or mobile device. For details please inquire with the Contact Person listed on the notice.

Individuals needing special accommodations (e.g., sign language, or interpreting services, etc.) must submit a request to the Contact Person listed on the notice at least seven (7) business days prior to the meeting; last minute requests may not be possible to accommodate. Such requests should include a detailed description of the accommodation needed and a way for the IACC to contact the requester if more information is needed to fill the request.
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.
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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meeting agenda Agenda

Time Event
 9:00 a.m.
Welcome, Introductions, Roll Call, and Approval of Minutes
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
Report from the HHS National Autism Coordinator
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
HCBS Final Rule: Current Issues and Future Directions
9:15 Melissa Harris
Acting Deputy Director, Disabled and Elderly Health Programs Group, Center for Medicare and CHIP Services, Centers for Medicare and Medicaid Services (CMS)
9:35
Discussion
10:00
TRICARE Autism Care Demonstration
10:00 Capt. Edward Simmer, M.D.
Chief Clinical Officer, TRICARE Health Plan, Defense Health Agency, Department of Defense

Krystyna Bienia, Psy.D.
Clinical Psychologist, Senior Policy Analyst, Defense Health Agency, Department of Defense
10:20
Discussion
10:45
Morning Break
11:00
Committee Business
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
Public Comment Session
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
Oni Celestin, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH
 2:15
DOJ Presentation: Kevin and Avonte’s Law, and Disability Programs
 2:15 Introduction
Alison Singer, M.B.A.
IACC Member, President, Autism Science Foundation
 2:20 Lori McIlwain
Co-Founder, Board Member, National Autism Association
 2:40 Maria Fryer
Policy Advisor for Substance Abuse and Mental Health, Bureau of Justice Assistance, Office of Justice Programs, Department of Justice
 3:00 Leemie Kahng-Sofer
Program Manager, Missing Children Division, National Center for Missing and Exploited Children
 3:25
Discussion
 3:45
Afternoon Break
 4:00
Summary of Advances Discussion
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
 4:45
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 https://iacc.hhs.gov/meetings/

Next IACC Full Committee Meeting:

  • Wednesday, April 17, 2019 – Neuroscience Center, Rockville MD

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meeting speakers Speakers

Alison Tepper Singer, M.B.A.

Parent/Family Member and Founder and President, Autism Science Foundation

Photo of Alison Singer

Ms. Alison Singer has served as a public member on the IACC since 2007. Ms. Singer is Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research. The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Ms. Singer is the mother of a child with autism and legal guardian of her adult brother with autism. From 2005-2009 she served as Executive Vice President and a Member of the Board of Directors at Autism Speaks. Ms. Singer also currently serves as Chair of the Associates Committee of the Seaver Autism Center at Mount Sinai School of Medicine, and on the external advisory boards of the Yale Child Study Center, the Marcus Autism Center at Emory University, and the CDC's Center for Birth Defects and Developmental Disabilities. She chairs the public relations committee for the International Society for Autism Research (INSAR) and serves as a member of the program committee for the International Meeting for Autism Research (IMFAR). Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

Melissa L. Harris

Acting Deputy Director, Disabled and Elderly Health Programs Group, Center for Medicaid and CHIP Services, Centers for Medicare and Medicaid Services (CMS)

Photo of Melissa Harris

Melissa Harris joined the IACC as a Federal member in 2015. Ms. Harris currently serves as the Acting Deputy Director of the Disabled and Elderly Health Programs Group (DEHPG) at CMS. Prior to this, she led the Division of Benefits and Coverage (formerly the Division of Coverage and Integration), overseeing the implementation of the Medicaid state plan benefit structure. In this position she also provided policy and operational guidance on the Alternative Benefit Plan coverage authority for the Medicaid expansion population. Ms. Harris has also been a Technical Director for the Disabled and Elderly Health Programs Groups, Division of Coverage & Integration (DCI). In this role she, provided leadership to DCI on policy-setting for the following Medicaid topics: targeted case management, rehabilitative services, adult day health care, inpatient psychiatric services for individuals under age 21, home health, institutions of mental diseases, school-based services, hospice benefit, and private duty nursing. In addition to other responsibilities, she co-chaired a cross-cutting team within CMS to implement Affordable Care Act provision 2703 – State Plan Option to Provide Health Homes to Enrollees with Chronic Conditions. Ms. Harris has also previously served as a Health Insurance Specialist for the Disabled and Elderly Health Program Group. Ms. Harris has a Certified Public Accountant License and is a graduate of Salisbury State University.

CAPT Edward Simmer, MC, USN

Chief Clinical Officer, TRICARE Health Plan/J10; Officer-in-Charge, DHA Navy Element, Defense Health Agency

Photo of Edward Simmer

Captain Edward Simmer currently serves as the Chief Clinical Officer for the TRICARE Health Plan at the Defense Health Agency in Falls Church, VA. In this role he is responsible for overseeing all clinical aspects of the civilian medical and dental care provided to the 9.4 million beneficiaries of the Military Health System, including through TRICARE’s Autism Care Demonstration. Captain Simmer has served 28 years of active duty in the Navy, with duties including Commanding Officer of Naval Hospital Oak Harbor, Executive Officer Naval Hospital Beaufort, Senior Executive Director of Psychological Health at the Defense Centers of Excellence for Psychological Health and TBI, and Director for Quality at Naval Medical Center Portsmouth. He served as the General Medical Officer on the U.S.S. Enterprise (CVN-65), and Division Psychiatrist for 2d Marine Division. He has also deployed to Iraq with the 113th Combat Stress Control Company, and served as Head of the Navy’s Special Psychiatric Rapid Intervention Team (SPRINT) for nine years, leading responses to numerous traumatic incidents, including Hurricanes Ivan and Katrina and the U.S.S. Cole (DDG-67) bombing. He has a M.D. degree from Saint Louis University and completed his Psychiatry Residency at Naval Medical Center, Portsmouth. He is Board Certified in General and Forensic Psychiatry.

Krystyna Bienia, Psy.D.

Clinical Psychologist, Medical Affairs, Defense Health Agency

Photo of Krystyna Bienia

Dr. Krystyna Bienia is a clinical psychologist and a senior policy analyst for the Defense Health Agency (DHA) in the Medical Affairs Directorate in Falls Church, VA. Dr. Bienia serves as the clinical program lead supporting the TRICARE Health Plans for the rapidly evolving Autism Care Demonstration where she implements clinical expertise in program development and oversight for a program that significantly impacts overall Military readiness. She has over ten years of experience working directly with beneficiaries diagnosed with Autism Spectrum Disorder as well as their families and other health care providers. Dr. Bienia was involved in the Department of Defense publication of the Final Rule in 2016: “TRICARE: Mental Health and Substance Use Disorder (SUD) Treatment” that contained comprehensive revisions to the TRICARE regulation for mental health and SUD treatment for all TRICARE eligible beneficiaries. She participated in the overhaul of the TRICARE Program Manual changes that implemented the sweeping rulemaking changes. Dr. Bienia also worked at Fort Belvoir Community Hospital in the Adult Outpatient Behavioral Health Clinic until 2013 at which time she came over to DHA. Dr. Bienia currently maintains a private practice providing evidence-based mental health services.She holds a Doctorate in Clinical Psychology from Argosy University/Washington D.C.

Maria Fryer

Policy Advisor for Substance Abuse and Mental Health, Bureau of Justice Assistance, Office of Justice Programs, U.S. Department of Justice

Photo of Maria Fryer

Ms. Maria Fryer is a policy advisor for the Department of Justice, Bureau of Justice Assistance. She oversees the justice and behavioral health discretionary grant portfolio and collaborates with multiple private and federal agencies, to assist states, local government, and their behavioral health service providers to better understand the relationship between the criminal justice system, the behavioral health system, and people with mental illness (MI), intellectual/developmental disabilities (IDD) and co-occurring mental illness and substance abuse. In this role, she assist states, tribes and local governments develop policies and best practices to reduce the number of people with MI and IDD in the criminal justice system. She administers the Justice and Mental Health Collaboration (JMHCP) Grant Program, and other justice and mental health initiatives, to meet the needs of communities and the citizens they serve. Through the JMHCP program, the Bureau of Justice Assistance has made 482 of awards, in excess of 121 million in funding to the field to the field. Maria joined BJA from the North Carolina Governor's Crime Commission where she addressed the needs of victims of violent crime with policy, statute, federal law, and federal block grant funding. She has also served as a North Carolina Law Enforcement Instructor and assisted with curriculum development through the North Carolina Justice Academy. Her work history includes: intensive case management in community corrections for people with co-occurring disorders, family services, adjunct criminal justice professor and service in the United States Military Police Corps. She has a Master’s of Science in Criminal Justice and with a minor in Educational Psychology from North Carolina Central University.

Leemie Kahng-Sofer

Program Manager, Missing Children Division, National Center for Missing & Exploited Children

Photo of Leemie Kahng-Sofer

Ms. Leemie Kahng-Sofer is based out of NCMEC's Texas Regional Office and oversees case management staff in the regional offices located in Lake Park, Florida, Rochester, New York and Austin, Texas. She is also responsible for major Missing Children Division initiatives such as the development of the Division’s new enterprise application as well as programs of work related to critically missing children, children missing from care, child sex trafficking and Project FIGHT (Federal Inspectors General Helping Team - Fighting for Long-Term Missing Children). Prior to joining NCMEC, Ms. Kahng-Sofer served as a prosecutor with the Manhattan District Attorney's Office in New York City where she investigated and prosecuted cases ranging from white-collar to violent crimes. She specialized in Asian gang extortion and kidnapping cases, and adult sex crimes cases. She later served as the Deputy Director of Legal Training as well as Deputy Chief of the Sex Crimes Prosecution Unit. She has also authored two chapters of a judicial bench book for the State of Pennsylvania covering Pennsylvania criminal statutes designed to protect children and protect the public from sexual offenders. She graduated cum laude with a Bachelor of Arts in Political Science from Wellesley College and received a Juris Doctor from Cornell University Law School.

Lori McIlwain

Co-Founder and Board Chair, National Autism Association

Photo of Lori McIlwain

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.


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meeting materials Materials

Materials Related to HCBS Final Rule: Current Issues and Future Directions


Materials Related to TRICARE Autism Care Demonstration


Materials Related to DOJ Presentation: Kevin and Avonte’s Law, and Disability Programs


Materials Related to Public Comments


2018 Summary of Advances Nominations:



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meeting slides Slides


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meeting comments Public Comments


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