FACACLASSIC

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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	2025	Committee Number	31970
Original Establishment Date	7/31/2007	Committee Status	Chartered
Actual Termination Date		Committee URL	http://iacc.hhs.gov/
Actual Merged Date		Presidential Appointments*	No
New Committee This FY	No	Max Number of Members*	Unlimited
Terminated This FY	No	Designated Fed Officer Position Title*	Director, Office of Autism Research Coordination
Merged This FY		Designated Federal Officer Prefix
Current Charter Date	9/30/2024	Designated Federal Officer First Name*	Susan
Date Of Renewal Charter	9/30/2026	Designated Federal Officer Middle Name	A.
Projected Termination Date		Designated Federal Officer Last Name*	Daniels
Exempt From Renewal*	No	Designated Federal Officer Suffix	PHD
Specific Termination Authority	42 USC 280i-2	Designated Federal Officer Phone*	(301) 443-2756
Establishment Authority*	Statutory (Congress Created)	Designated Federal Officer Fax*	(301) 480-1014
Specific Establishment Authority*	42 USC 280i-2	Designated Federal Officer Email*	sdaniels@mail.nih.gov
Effective Date Of Authority*	12/19/2006
Exempt From EO 13875 Discretionary Cmte	Not Applicable
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 Continuing Appropriations Act, 2025, reauthorized the committee through December 20, 2024. The IACC’s charge (under the Autism CARES Act of 2019) is to: (1) 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; (2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder across the lifespan of such individuals; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions; (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— (A) an annual update on the summary of advances; and (B) an annual update to the strategic plan, including any progress made in achieving the goals outlined in such strategic plan. The IACC Strategic Plan and its subsequent updates have been produced through a collaborative effort between the IACC, self-advocates, family members, members of advocacy and service organizations, researchers, clinicians, federal government employees, and the public to identify needs and opportunities for research, services, and policy to improve the lives of individuals with autism and their families. The Plan cites specific Recommendations for different areas of autism research and services, including Screening and Diagnosis, Biology, Genetic and Environmental Factors, Interventions, Services and Supports, Lifespan, and Infrastructure and Prevalence. The IACC published its first Strategic Plan for ASD Research in January 2009 and has issued updates to the Strategic Plan in subsequent years. Most recently, the Committee completed the 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy, which was published in September 2023. The IACC has also published an annual Summary of Advances in Autism Research in accordance with requirements in the CAA and subsequent legislation. In December 2023, the 2022 IACC Summary of Advances in Autism Research was published, describing the top 20 autism research advances identified by the Committee from research articles published in calendar year (CY) 2021. The 2023 IACC Summary of Advances is expected to be published in the fall of 2024. When in session, the Committee also monitors federal activities related to autism through presentations at meetings of the full IACC 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 five times in FY2024 on the following dates 10/11/2023, 1/24/2024, 4/17/2024, 7/10/2024, and 9/23/2024.
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: Dr. Lawrence Tabak stepped down from the committee on 11/08/2023 and was replaced by Dr. Monica Bertagnolli; Dr. Joshua Gordon (Chair) stepped down from the committee on 06/15/2024; Dr. Shelli Avenevoli was appointed as Chair 06/16/2024 – 09/30/2024; Dr. Walter Koroshetz stepped down in 06/30/2024 and was replaced by Dr. Kristi Hardy. Dr. Brooke Mount stepped down from the committee on 03/30/2024 and was replaced by Ms. Deirdra Assey; Dr. Larry Wexler stepped down from the committee on 12/31/2023 and was replaced by Dr. Christy Kavulic; Dr. Anita Everett stepped down from the committee on 03/31/2024 and was replaced by Dr. Nikhil Patel; Dr. Allyson Dean became a member of the committee on 07/01/2024, replacing Ms. Dayana Garcia who stepped down in 2023; Ms. Barbara Roland stepped down from the committee on 9/30/2024.

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*	108	Access Contact Designated Fed. Officer*	Yes
Number Of Recommendations Comment	These 108 recommendations are the total number of recommendations for FY2008 through FY2024. The committee did not make any new recommendations in FY2024.	Access Agency Website	Yes
% of Recs Fully Implemented*	42.59%	Access Committee Website	Yes
% of Recs Fully Implemented Comment	Of the 108 recommendations (42.59%) have been fully implemented (including 45 Strategic Plan objectives and 1 research recommendation).	Access GSA FACA Website	Yes
% of Recs Partially Implemented*	55.00%	Access Publications	Yes
% of Recs Partially Implemented Comment	Of the 108 overall recommendations made by the IACC to date, 55.56% have been partially implemented (including 57 Strategic Plan objectives and 3 letters to the Secretary). Together, 106 of the 108 recommendations (98.15%) 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) 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; (2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder across the lifespan of such individuals; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions; (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— (A) an annual update on the summary of advances; and (B) an annual update to the strategic plan, including any progress made in achieving the goals outlined in such strategic plan. The IACC Strategic Plan and its subsequent updates have been produced through a collaborative effort between the IACC, self-advocates, family members, members of advocacy and service organizations, researchers, clinicians, federal government employees, and the public to identify needs and opportunities for research, services, and policy to improve the lives of individuals with autism and their families. The Plan cites specific Recommendations for different areas of autism research and services, including Screening and Diagnosis, Biology, Genetic and Environmental Factors, Interventions, Services and Supports, Lifespan, and Infrastructure and Prevalence. The IACC published its first Strategic Plan for ASD Research in January 2009 and has issued updates to the Strategic Plan in subsequent years. Most recently, the Committee completed the 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy, which was published in September 2023. The IACC has also published an annual Summary of Advances in Autism Research in accordance with requirements in the CAA and subsequent legislation. In December 2023, the 2022 IACC Summary of Advances in Autism Research was published, describing the top 20 autism research advances identified by the Committee from research articles published in calendar year (CY) 2021. The 2023 IACC Summary of Advances is expected to be published in the fall of 2024. When in session, the Committee also monitors federal activities related to autism through presentations at meetings of the full IACC 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

1. Payments to Non-Federal Members*		1. Est Paymnts to Non-Fed Membrs Nxt FY*
2. Payments to Federal Members*		2. Est. Payments to Fed Members Next FY*
3. Payments to Federal Staff*		3. Estimated Payments to Federal Staff*
4. Payments to Consultants*		4. Est. Payments to Consultants Next FY*
5. Travel Reimb. For Non-Federal Membrs*		5. Est Travel Reimb Non-Fed Membr nxtFY*
6. Travel Reimb. For Federal Members*		6. Est Travel Reimb For Fed Members*
7. Travel Reimb. For Federal Staff*		7. Est. Travel Reimb to Fed Staf Nxt FY*
8. Travel Reimb. For Consultants*		8. Est Travel Reimb to Consltnts Nxt FY*
10. Other Costs		10. Est. Other Costs Next FY*
11. Total Costs	$0.00	11. Est. Total Next FY*	$0.00
Date Cost Last Modified	3/14/2025 9:44 AM	Est. Fed Staff Support Next FY*
Federal Staff Support (FTE)*		Est Cost Remarks
Cost Remarks

Interest Areas

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

Custom Links

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