FACA

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HHS - 31970 - Interagency Autism Coordinating Committee - Statutory (Congress Created)

GENERAL INFORMATION

Committee Name	Interagency Autism Coordinating Committee	Agency Name	Department of Health and Human Services
Fiscal Year	2022	Committee Number	31970
Original Establishment Date	7/31/2007	Committee Status	Chartered
Actual Termination Date		Committee URL	http://iacc.hhs.gov/
New Committee This FY	No	Presidential Appointments*	No
Terminated This FY	No	Max Number of Members*	Unlimited
Current Charter Date	9/30/2022	Designated Fed Officer Position Title*	Director, Office of Autism Research Coordination
Date Of Renewal Charter	9/30/2024	Designated Federal Officer Prefix
Projected Termination Date		Designated Federal Officer First Name*	Susan
Exempt From Renewal*	No	Designated Federal Officer Middle Name	A.
Specific Termination Authority	42 USC 280i-2	Designated Federal Officer Last Name*	Daniels
Establishment Authority*	Statutory (Congress Created)	Designated Federal Officer Suffix	PHD
Specific Establishment Authority*	42 USC 280i-2	Designated Federal Officer Phone*	(301) 443-2756
Effective Date Of Authority*	12/19/2006	Designated Federal Officer Fax*	(301) 480-1014
Exempt From EO 13875 Discretionary Cmte	Not Applicable	Designated Federal Officer Email*	sdaniels@mail.nih.gov
Committee Type*	Continuing
Presidential*	No
Committee Function*	Scientific Technical Program Advisory Board

RECOMMENDATION/JUSTIFICATIONS

Agency Recommendation*	Continue
Legislation to Terminate Required	Not Applicable
Legislation Status	Not Applicable
How does cmte accomplish its purpose?*	The Interagency Autism Coordinating Committee (IACC) was established in August 2007 as required by the Combating Autism Act (CAA) of 2006 (P.L. 109-416) to coordinate all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The committee was reauthorized by the Combating Autism Reauthorization Act of 2011 (CARA) (P.L. 112-32), enacted on September 30, 2011, and again by the Autism Collaboration Accountability Research Education and Services (CARES) Act, enacted on August 8, 2014. The Autism Collaboration Accountability Research Education and Services (CARES) Act of 2019 was signed by the President on September 30, 2019, reauthorizing the committee through September 30, 2024. The IACC’s charge (under the Autism CARES Act of 2019) is to: (1) develop and annually update a summary of advances in ASD research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with ASD across the lifespan of such individuals; (2) monitor autism spectrum disorder research, and to the extent practicable services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to ASD; (5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports, for individuals with an autism spectrum disorder across the lifespan of such individuals and the families of such individuals, which shall include—(A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; (6) submit to the Congress and the President the annual update of the summary of advances; and (7) submit to the Congress and the President the strategic plan and annual updates to the strategic plan. The IACC Strategic Plan and its subsequent updates have been produced through a collaborative effort between the IACC, scientists, advocacy organizations, and the public to identify needs and opportunities for research, services, and policy to improve the lives of individuals with autism spectrum disorder and their families. The plan cites specific objectives for different areas of ASD research and services, including diagnosis, the biology of ASD, risk factors, treatments, services, lifespan issues, surveillance/infrastructure/workforce/outreach. The 2018-2019 IACC Strategic Plan Update was published in June 2020. Since the IACC reconvened in July 2021, the committee has been developing a new IACC Strategic Plan expected to be published in 2023. The IACC has also published an annual Summary of Advances in Autism Spectrum Disorder Research in accordance with requirements in the Combating Autism Act and subsequent legislation. In June 2022, the IACC issued its 2020 Summary of Advances in ASD Research, describing the top 20 ASD research advances identified by the committee from research articles published in CY 2020. This publication identifies emerging discoveries that may be relevant to the update of the IACC Strategic Plan and other IACC activities. The 2021 IACC Summary of Advances is in preparation. When in session, the Committee also monitors Federal activities related to ASD through presentations at meetings of the full IACC and its Subcommittees and working groups and provides access to meeting webcasts, minutes, transcripts and materials on the IACC website. All IACC meetings, including IACC virtual meetings, conference calls, and IACC-sponsored workshops, are open to the public.
How is membership balanced?*	Under the Autism CARES Act of 2019, the Interagency Autism Coordinating Committee consists of Federal members and non-Federal public members: Federal Membership (voting Ex Officios): The Committee is composed of the following Federal members or their designees; the Director of the Centers for Disease Control and Prevention; the Director, NIH, and the Directors of such national research institutes of the NIH as the Director, NIMH, by delegation, determines appropriate; the heads of such other agencies of the Department of Health and Human Services as the Director, NIMH, by delegation, determines appropriate, such as the Administration for Community Living, Administration for Children and Families, the Centers for Medicare & Medicaid Services, the Food and Drug Administration, and the Health Resources and Services Administration; and representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorder such as the Department of Education, the Department of Labor, the Department of Justice, the Department of Veterans Affairs, the Department of Housing and Urban Development, and the Department of Defense. Non-Federal Membership (Public): Not more than one-half, but not fewer than one-third, of the total membership of the committee is composed of non-Federal public members appointed by the Secretary. Public membership is required to include at least three individuals with a diagnosis of Autism Spectrum Disorder (ASD); at least three parents or legal guardians of an individual with ASD; and at least three representatives of leading research, advocacy, and service organizations for individuals with ASD.
How frequent & relevant are cmte mtgs?*	Meetings of the full committee are held not less than two times within a fiscal year. The full committee met three times in FY2022 on the following dates 10/13/2021-10/14/2021, 1/19/2022, and 4/13/2022-4/14/2022. The Strategic Plan Working Group of the committee met on 7/13/2022-7/14/2022.
Why advice can't be obtained elsewhere?*	This committee is mandated by the Combating Autism Act of 2006 of the Public Health Service Act, as amended, and was reauthorized most recently by the Autism CARES Act of 2019. It coordinates efforts concerning autism spectrum disorder among member federal agencies and private autism research, service, and advocacy organizations. The Committee's primary mission is to provide advice to the Secretary of Health and Human Services on matters concerning autism spectrum disorder and to facilitate the efficient and effective exchange of information on autism activities among the member federal agencies in order to enhance coordination of autism-related programs and activities. The Committee, composed of federal officials and public stakeholders, assists in increasing public understanding of the member agencies' activities, programs, policies, and research and serves as a public forum for discussions related to autism spectrum disorder. There are U.S. federal advisory committees that are focused on the needs of individuals with disabilities, but there is no other federal advisory committee that is dedicated specifically to the needs of individuals with autism spectrum disorder and that performs functions similar to the IACC.
Why close or partially close meetings?	All meetings of the IACC are open to the public.
Recommendation Remarks	Based on the assignment of duties, Dr. Susan Daniels serves as both the designated federal officer and the committee decision-maker for this committee. Ex Officio Members: The term end date for Dr. Francis Collins was changed from 12/31/2021 to 12/19/2021 as it accurately reflects his official date of departure from the NIH. Dr. Gordon's term date was incorrectly recorded in FY21. The member record has been corrected to display the correct term of service. Ex Officio members Jennifer Sheehy and Miranda Carman both stepped down from the committee before their term end dates of 9/30/24. Dr. Nina Schor transitioned to Acting Deputy Director for Intramural Research in August of 2022, but she kept her primary position at NINDS until the position was approved, Non-Federal Members: Dr. Valerie Paradiz retired from the committee on 11/22/2021 before her regular term ended.

PERFORMANCE MEASURES

Outcome Improvement To Health Or Safety*	Yes	Action Reorganize Priorities*	Yes
Outcome Trust In Government	Yes	Action Reallocate Resources	Yes
Outcome Major Policy Changes	No	Action Issued New Regulations	No
Outcome Advance In Scientific Research	Yes	Action Proposed Legislation	No
Outcome Effective Grant Making	No	Action Approved Grants Or Other Payments	Yes
Outcome Improved Service Delivery	Yes	Action Other	No
Outcome Increased Customer Satisfaction	Yes	Action Comment	In response to recommendations, Federal agencies have included consideration of objectives in the IACC Strategic Plan in their programmatic planning effort which has influenced research and policies, though in most cases the Strategic Plan was only one of many factors considered. In some cases, projects such as the funding of specific workshops, were prioritized by agencies largely, but not solely, in response to the IACC Strategic Plan. In addition, in some cases, initiatives were planned in response to IACC recommendations, which has resulted in grants being funded in areas that were not previously covered.
Outcome Implement Laws/Reg Requirements	Yes	Grants Review*	No
Outcome Other	No	Number Of Grants Reviewed	0
Outcome Comment	NA	Number Of Grants Recommended	0
Cost Savings*	Unable to Determine	Dollar Value Of Grants Recommended	$0.00
Cost Savings Comment	The committee's mission is to develop and annually update a strategic plan for autism spectrum disorder (ASD) research and services.	Grants Review Comment	NA
Number Of Recommendations*	106	Access Contact Designated Fed. Officer*	Yes
Number Of Recommendations Comment	These 106 recommendations are the total number of recommendations for FY2008 through FY2022.	Access Agency Website	Yes
% of Recs Fully Implemented*	43.00%	Access Committee Website	Yes
% of Recs Fully Implemented Comment	Of the 106 recommendations (43%) have been fully implemented (including 45 Strategic Plan objectives and 1 research recommendation).	Access GSA FACA Website	Yes
% of Recs Partially Implemented*	32.00%	Access Publications	Yes
% of Recs Partially Implemented Comment	Of the 106 overall recommendations made by the IACC to date, 32% have been partially implemented (including 32 Strategic Plan objectives and 2 letters to the Secretary). Together, 80 of the 106 recommendations (77%) have been either partially or fully implemented.	Access Other	No
Agency Feedback*	Yes	Access Comment	NA
Agency Feedback Comment*	The agency provides feedback at the IACC meetings, in reports, in response letters, and on the agency web site. Information is provided to the public at each meeting. The public can view information related to the Committee through the committee’s official website.	Narrative Description*	The Interagency Autism Coordinating Committee (IACC) was established in August 2007 as required by the Combating Autism Act (CAA) of 2006 (P.L. 109-416) to coordinate all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The committee was reauthorized by the Combating Autism Reauthorization Act of 2011 (CARA) (P.L. 112-32), enacted on September 30, 2011, and again by the Autism Collaboration Accountability Research Education and Services (CARES) Act, enacted on August 8, 2014. The Autism Collaboration Accountability Research Education and Services (CARES) Act of 2019 was signed by the President on September 30, 2019, reauthorizing the committee through September 30, 2024. The IACC’s charge (under the Autism CARES Act of 2019) is to: (1) develop and annually update a summary of advances in ASD research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with ASD across the lifespan of such individuals; (2) monitor autism spectrum disorder research, and to the extent practicable services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to ASD; (5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports, for individuals with an autism spectrum disorder across the lifespan of such individuals and the families of such individuals, which shall include—(A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; (6) submit to the Congress and the President the annual update of the summary of advances; and (7) submit to the Congress and the President the strategic plan and annual updates to the strategic plan. The IACC Strategic Plan and its subsequent updates have been produced through a collaborative effort between the IACC, scientists, advocacy organizations, and the public to identify needs and opportunities for research, services, and policy to improve the lives of individuals with autism spectrum disorder and their families. The plan cites specific objectives for different areas of ASD research and services, including diagnosis, the biology of ASD, risk factors, treatments, services, lifespan issues, surveillance/infrastructure/workforce/outreach. The IACC published their first Strategic Plan for ASD Research in January 2009 and has issued annual updates to the Strategic Plan in subsequent years. In October 2017, the IACC issued the 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder, which contained an entirely new set of 23 objectives describing the top priority areas for autism research and services based on the IACC’s analysis of research progress and changes in services over the last several years. The 2018-2019 IACC Strategic Plan Update was published in June 2020. The IACC has also published an annual Summary of Advances in Autism Spectrum Disorder Research in accordance with requirements in the Combating Autism Act and subsequent legislation. In May 2020, the IACC issued its 2019 Summary of Advances in ASD Research, describing the top 20 ASD research advances identified by the committee from research articles published in CY 2019. This publication identifies emerging discoveries that may be relevant to the update of the IACC Strategic Plan and other IACC activities. When in session, the Committee also monitors Federal activities related to ASD through presentations at meetings of the full IACC and its Subcommittees and working groups and provides access to meeting webcasts, minutes, transcripts and materials on the IACC website. All IACC meetings, including IACC virtual meetings, conference calls, and IACC-sponsored workshops, are open to the public.

COSTS

Payments to Non-Federal Members*	$29,000.00	Est Payments to Non-Fed Members Next FY*	$36,800.00
Payments to Federal Members*	$108,810.00	Est. Payments to Fed Members Next FY*	$124,355.00
Payments to Federal Staff*	$830,308.00	Estimated Payments to Federal Staff*	$846,914.00
Payments to Consultants*	$0.00	Est. Payments to Consultants Next FY*	$0.00
Travel Reimb. For Non-Federal Members*	$0.00	Est Travel Reimb Non-Fed Members nextFY*	$102,227.00
Travel Reimb. For Federal Members*	$0.00	Est Travel Reimb For Fed Members*	$0.00
Travel Reimb. For Federal Staff*	$3,156.00	Est. Travel Reimb to Fed Staff Next FY*	$31,788.00
Travel Reimb. For Consultants*	$0.00	Est Travel Reimb to Consultants Next FY*	$0.00
Other Costs	$1,472,761.00	Est. Other Costs Next FY*	$1,592,575.00
Total Costs	$2,444,035.00	Est. Total Next FY*	$2,734,659.00
Date Cost Last Modified	11/7/2022 6:40 PM	Est. Fed Staff Support Next FY*	7.50
Federal Staff Support (FTE)*	7.50	Est Cost Remarks	Projected costs for FY23 were increased in the event that in-person/hybrid meetings resume.
Cost Remarks	The FY 2022 costs for this ACR include the expenses directly related to the managing of the IACC but do not reflect all of the inter-related costs. Actual costs were lower than projected because meetings were held virtually in FY22 due to the ongoing COVID-19 pandemic. Daily salary costs have been estimated for Federal and/or Ex Officio members of this committee. The dollar figure represents a portion of their annual salary. No funds have been transferred between the committee and the agency. No additional funds are paid to Federal employees due to membership on this committee. Although five Federal/Ex officio members are identified in the member section, only three attended meetings during the fiscal year.

Interest Areas

Category Area Medicine Diseases Health and Health Research Rehabilitation Rehabilitation and Disability

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