IACC Full Committee Meeting

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Announcement

Topic	Topic Description
Date:	Wednesday, October 17, 2018
Time:	9:00 a.m. to 5:00 p.m. Eastern
Place:	National Institute of Mental Health (NIMH) 6001 Executive Boulevard, Neuroscience Center (NSC) Conference Rooms C and D Rockville, MD 20850
Metro Stop:	White Flint 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.
Remote Access:	Conference Call: Dial: 800-369-3190 Access code: 1724926 Webcast: https://videocast.nih.gov/live.asp?live=28293&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.
Cost:	The meeting is free and open to the public.
Deadlines:	Notification of intent to present oral comments: Friday, October 5, 2018 by 5:00 p.m. ET Submission of written/electronic statement for oral comments: Tuesday, October 9, 2018 by 5:00 p.m. ET Submission of written comments: Tuesday, October 9, 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, October 5, 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, October 9, 2018. Expand for more 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 link: https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp by 5:00 p.m. ET on Tuesday, October 9, 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, October 9, 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, October 9, 2018 deadline through October 15, 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 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. Special Accommodations: Individuals who 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 5 days prior to the meeting. Security 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: 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

Agenda

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:

• January 16, 2019 – Location TBD

Speakers

Jack Scott, Ph.D., B.C.B.A.-D.

Member, Autism Society Panel of Professional Advisors; Executive Director, Florida Atlantic University Center for Autism and Related Disabilities

Dr. Jack Scott is the Executive Director of the FAU CARD center and serves as a member of the Autism Society Panel of Professional Advisors. He is an associate professor in the Department of Exceptional Student Education and teaches courses on inclusion, special education and behavior analysis. Dr. Scott has research interests in early intensive behavioral intervention, particularly parent-directed home programs and reading instruction for children with autism. He is a behavior analyst and serves as the autism area program coordinator for the Association for Behavior Analysis. In addition, he has provided special assistance to the Ministry of Education in Belize to help their teachers become more effective in educating children with autism in this Central American country. Dr. Scott received his doctoral degree from the University of Florida.

Stuart Spielman, Esq.

Senior Vice President, Advocacy, Autism Speaks

Mr. Stuart Spielman assumed the role of Senior Vice President of Advocacy at Autism Speaks in July of 2008. He first joined Autism Speaks in 2008 as senior policy advisor and counsel after a long legal career and years of advocacy as a volunteer. Over the past two decades, he has led or contributed to important initiatives including Maryland’s Home and Community-Based Services Waiver for Children with Autism Spectrum Disorder, improved health insurance benefits for autism through the Federal Employees Health Benefits Program, The Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014 (ABLE), The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES) and earlier laws that authorize autism research, surveillance and training. Mr. Spielman holds a juris doctor from the University of Wisconsin School of Law and a master’s degree in laws in taxation from the New York University School of Law. He has two adult sons, one of whom is on the autism spectrum.

Bette Ann Mobley

Director, Maryland ABLE

Ms. Bette Ann Mobley is the Director of Maryland ABLE and has worked with state and national organizations in the field of intellectual and developmental disabilities for more than 35 years. She has served in many leadership roles supporting people with disabilities through advocacy, developing and implementing quality systems, and providing consultation to organizations that provide supports and services. She previously held the position as the Assistant Director for Programs with the Maryland Developmental Disabilities Administration where she was able to establish relationships with key stakeholders and leaders throughout Maryland. As Director of the Maryland ABLE program she is part of the development and implementation of ABLE in Maryland and nationwide. Throughout this process Bette Ann welcomes input and feedback to ensure that the program is designed and implemented to help people with their investment and savings needs without jeopardizing their benefits.

Colin Meeks, C.F.P., Ch.F.C., C.L.U.

Certified Financial Planner, Maryland Financial Advocates; Host, Special Needs Connection Podcast

Mr. Colin Meeks founded Maryland Financial Advocates (formerly Complete Money Management), an independent financial services firm, in 1999 and has been serving area families ever since. The practice specializes in comprehensive financial planning with a strong focus on special needs planning and eldercare financial planning. Previously, he worked at a captive insurance agency and has over 20 years of experience. Mr. Meeks is also the host of the Special Needs Connection, a weekly podcast that connects families and people with special needs with people, places, and services. He also serves on the Board of Directors for the Autism Society of Baltimore-Chesapeake and the First Maryland Disability Trust. Mr. Meeks went to the University of Maryland for his undergraduate degree and went on to the American College of Financial Services and the College for Financial Planning.

Phoebe Ball, Esq.

Legislative Affairs Specialist, National Council on Disability

Ms. Phoebe Ball joined the National Council on Disability (NCD) as a Legislative Affairs Specialist in 2014. Ms. Ball monitors Congressional activity on issues that are important to the disability community and cultivates and maintains effective working relationships with NCD stakeholders at the federal, state, and local levels. In her position, Ms. Ball bridges the gap between policy concepts and real lives through her work on the team that develops NCD publications. Previously, she was a staff attorney for Disability Rights Florida (DRF), a non-profit organization that provides protection and advocacy services in the state of Florida. At DRF, Phoebe regularly worked on Medicaid-related issues including access to home- and community-based services, self-determination, and guardianship. Prior to working in Florida, Phoebe worked for the Law, Health Policy and Disability Center at the University of Iowa on projects focused on advancing the economic, social, and civic empowerment of people with disabilities. Ms. Ball is also active in the Independent Living movement, having previously worked for and been board chair of the Center for Independent Living in Iowa City. She received her J.D. from Northeastern University School of Law.

Materials

Materials Related to Autism Society Presentation: Unintentional Injury in Children and Youth with ASD:

• Autism Society Website
• Autism Society Ask The Expert: Jack Scott
• Garcia D, Dukes C, Brady MP, Scott J, Wilson CL. Using modeling and rehearsal to teach fire safety to children with autism. J Appl Behav Anal. 2016 Sep;49(3):699-704. doi: 10.1002/jaba.331. Epub 2016 Jun 30. PMID: 27357240
• Safety Issues and Individuals with Autism Spectrum Disorder (PDF – 349 KB)
• Autism Safety References and Resources (PDF – 180 KB)

Materials Related to The ABLE Act and Financial Planning for People with Disabilities Panel:

• Public Law 113-295: Stephen Beck Jr., Achieving a Better Life Experience Act of 2014 (ABLE Act)
• Autism Speaks’ Map of ABLE Programs
• Maryland ABLE Website
• National Council on Disability Website

2018 Summary of Advances Nominations:

• Nominations, April - October (PDF – 607 KB)

Minutes

• October Meeting Minutes (PDF 768 KB)

Public Comments

• Written Public Comments (PDF – 1 MB)

Slides

• IACC Meeting Full Slide Set (PDF 8MB)

Transcript

• Meeting Transcript (PDF – 551 KB)