Interagency Coordination

The Autism CARES Act specifies two mechanisms for coordination of autism activities across the federal government. The Act reauthorized the Interagency Autism Coordinating Committee (IACC) to coordinate federal agencies and collect input from autism community stakeholders to formulate advice and recommendations that can be used to guide federal activities. The Act also required the designation of a National Autism Coordinator (NAC), "an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities." The National Autism Coordinator also plays a role in ensuring that federal agencies are coordinated internally to implement advice provided by the IACC. The roles of the IACC and the NAC are described below.

The Interagency Autism Coordinating Committee

The IACC was established in its current form by Congress under the Combating Autism Act (CAA) of 2006 (P.L. 109-416) and was most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (Autism CARES) Act of 2014 (P.L. 113-157) to provide advice to the HHS Secretary concerning issues related to ASD and to coordinate federal ASD-related efforts. Among other functions, the IACC serves as a forum for public input on issues related to ASD. The committee uses this input to inform its activities, including the development of the IACC Strategic Plan for ASD which serves as a guide for federal agencies in planning ASD-related research, service and support activities. In addition, the committee monitors federal and community activities related to ASD and compiles an annual IACC Summary of Advances in ASD Research to inform Congress and the public of major advances in ASD research.

The Autism CARES Act outlines the membership of the IACC, which includes representatives of federal agencies and public members representing a variety of stakeholder groups within the autism community. Public membership includes individuals with ASD, family members of children and adults with ASD, autism researchers, and leaders of national research, service, and advocacy organizations. Federal members represent the following departments and agencies that address ASD research or services:

• Department of Health and Human Services
  
  • Administration for Children and Families (ACF)
  • Administration for Community Living (ACL)
  • Agency for Healthcare Research and Quality (AHRQ)
  • Centers for Disease Control and Prevention (CDC)
  • Centers for Medicare & Medicaid Services (CMS)
  • Food and Drug Administration (FDA)
  • Health Resources and Services Administration (HRSA)
  • Indian Health Service (IHS)
  • National Institutes of Health (NIH)
• Department of Defense (DoD)
• Department of Education (ED)
• Environmental Protection Agency (EPA)
• Social Security Administration (SSA)

Through its inclusion of both federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The Office of Autism Research Coordination (OARC) was established in 2008 at NIH to manage the committee and provide policy and communications support to enable the committee to carry out its Congressionally-mandated responsibilities.

IACC Fulfillment of Autism CARES Act Mandates

The activities of the IACC described below fulfill the committee's Congressional mandates under the Autism CARES Act:

"Develop and Annually Update a Strategic Plan for Autism Spectrum Disorder Research"

The IACC's original Strategic Plan was completed in 2009, and updates were issued for 2010, 2011, 2012, and 2013. These documents were submitted to Congress as required. Following the passage of the Autism CARES Act, new members were nominated to re-establish the committee, and the IACC resumed regular meetings in late 2015. The committee undertook a major revision of the IACC Strategic Plan in 2016 that was completed in 2017. The 2016-2017 IACC Strategic Plan provides a whole new set of updated objectives that cover both ASD research and services activities.

Since 2009, the IACC Strategic Plan has been organized around seven community-based Questions. These Questions were updated in the 2016-2017 edition of the Strategic Plan, although they remained focused on the same topics:

1. How Can I Recognize the Signs of ASD, and Why is Early Detection So Important? (Screening and Diagnosis)
2. What is the Biology Underlying ASD? (Biology)
3. What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted? (Risk Factors)
4. Which Treatments and Interventions Will Help? (Treatments and Interventions)
5. What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum? (Services)
6. How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? (Lifespan Issues)
7. How Do We Continue to Build, Expand, and Enhance the Infrastructure System to Meet the Needs of the ASD Community? (Infrastructure and Surveillance)

Each of the seven chapters of the IACC Strategic Plan describes the state of research and services activities in that area, the recent progress achieved, the most pressing needs of the community and the research field in that area, and what opportunities remain. Each Question area also contains a list of specific objectives that represent priorities or recommendations from the committee for activities that will advance knowledge and development in the seven areas.

"Develop and Annually Update a Summary of Advances in Autism Spectrum Disorder Research"

The IACC has issued an annual Summary of Advances in ASD Research for each of the following years: 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, and 2017. The Summary of Advances documents provide lay-friendly summaries of the year's top advances in ASD research as identified by the committee, covering specific areas mentioned in the Autism CARES Act: causes, prevention, treatment, early screening, diagnosis, interventions, and access to services and supports for individuals with ASD. Summaries are organized in alignment with the seven Question areas of the IACC Strategic Plan.

"Monitor Federal Activities With Respect to Autism Spectrum Disorder"

The IACC monitors federal and community ASD activities in several ways. At IACC meetings, the committee regularly hears presentations from federal and state agencies, researchers, and private organizations that are involved in ASD research and services activities, allowing the committee to stay abreast of recent developments and best practices. The IACC also reviews the research literature for Strategic Plan updates and to prepare its annual Summary of Advances in ASD Research.

OARC annually prepares an ASD Research Portfolio Analysis Report to assist the IACC in assessing progress on the IACC Strategic Plan. The Portfolio Analysis Report analyzes information about autism-related research projects funded by federal agencies and private organizations. The report describes progress that is being made toward achieving the objectives set forth in the IACC Strategic Plan in terms of both funding and projects, providing a snapshot of the research landscape and allowing the committee to determine which areas of its Strategic Plan are currently well-covered by ongoing research and which areas are still in need of additional efforts. This report provides valuable information about ASD research funding to both federal agencies and private research organizations.

The 2008, 2009, 2010, 2011-2012, 2013, 2014-2015, and 2016 ASD Research Portfolio Analysis Reports are available on the IACC website. The data collected for those reports have also been made available to the public in an online database, the IACC/OARC Autism Research Database, which provides members of the public with a user-friendly way to search, sort, and view analyses of various aspects of federally and privately-funded ASD research projects.

"Make Recommendations to the Secretary Regarding any Appropriate Changes to Federal Activities"

The IACC makes recommendations to the HHS Secretary in several ways. The 2016-2017 IACC Strategic Plan contains 23 objectives that serve as recommendations for further efforts in specific priority areas. In addition to the HHS Secretary, all of the federal agency representatives on the committee receive the IACC Strategic Plan and its updates for use in planning activities within their agencies. The IACC Strategic Plan is also sent to Congress and the President, and it is posted on the IACC website for public access.

The committee has also used advisory letters to the HHS Secretary as a method for providing advice. In recent years, the committee has written letters to the Secretary advising on emerging issues in the ASD community and recommending adjustments or improvements to federal activities to benefit the autism community: Letter to the Secretary on Wandering (2011), Letter to the Secretary on Seclusion and Restraint (2011), and Letter to the Secretary on Health Coverage (2013).

"The Committee Shall Meet not Fewer than Two Times Each Year"

The table below highlights IACC full committee, subcommittee, workgroups and planning groups, workshops and other meetings and events (in-person and conference call) that have taken place each year since 2007. The committee has met more than twice in every year since 2007, with two exceptions. The committee initially formed in 2007 and was only able to meet once that year. Following the passage of the Autism CARES Act, the committee was reconstituted in late 2015 and was only able to meet once that year.

All in-person and phone meetings of the full committee, subcommittees, planning groups, workshops, and town hall meetings of the IACC are open to the public.

IACC Full Committee Meetings, 2007-2018
Meeting	2007	2008	2009	2010	2011	2012	2013	2014	2015	2016	2017	2018
Meeting Full Committee	2007 1	2008 5	2009 7	2010 5	2011 4	2012 4	2013 4	2014 3	2015 1	2016 4	2017 4	2018 3

Table 1. The number of IACC Full Committee meetings that took place from 2007-2018.

Other IACC Meetings and Events, 2007-2018
Meeting	2007	2008	2009	2010	2011	2012	2013	2014	2015	2016	2017	2018
Meeting Sub-committee	2007 0	2008 5	2009 8	2010 10	2011 5	2012 4	2013 4	2014 4	2015 0‡	2016 0‡	2017 0‡	2018 0‡
Meeting Planning Groups/Workgroups	2007 0	2008 5	2009 0	2010 0	2011 0	2012 12	2013 12	2014 2	2015 0	2016 21	2017 0	2018 2
Meeting Workshops and Other Events	2007 0	2008 5	2009 2	2010 1	2011 1	2012 0	2013 1	2014 1	2015 0	2016 0	2017 0	2018 1
Meeting Totals	2007 1	2008 15	2009 10	2010 11	2011 6	2012 16	2013 17	2014 3	2015 0	2016 21	2017 0	2018 3

Table 2. The number of IACC Subcommittee, Workgroups and Planning Groups, Workshops and other meetings and events that took place from 2007-2018.
‡Since 2014, the IACC has used planning groups/workgroups instead of sub-committees to complete specific tasks, such as strategic plan updates and projects related to issues of public interest.

IACC/OARC Outreach and Transparency

OARC maintains an extensive website to facilitate public access to information about the IACC, its activities, and its publications. The IACC website currently posts the agenda, minutes, meeting materials, slides, and transcripts from the meetings of the IACC, its subcommittees and workgroups, as well as reports and publications produced by the committee. The website also contains background information about the committee and its work, links to non-IACC documents that are of interest to the autism community, and a list of ASD-relevant meetings and events that are open to the public.

OARC also launched and maintains the Autism Research Database (ARD), a publicly accessible database that makes available project data for all ASD research projects included in the IACC ASD Research Portfolio Analysis Reports. The ARD allows keyword searching, sorting, and specialized reports, which enables members of the public to quickly access detailed information about projects that have been funded both by the federal agencies and by participating private funders.

As a federal advisory committee, the IACC complies with the Federal Advisory Committee Act to ensure that every in-person meeting of the committee or subcommittees/working groups is open to the public. There are currently several remote access options available at each meeting, enabling the public to listen to or watch proceedings through conference calls, webcasts or webinars. In 2009 OARC began conducting live webcasts of all full committee meetings and then archiving them on the website. IACC-related meetings conducted by conference call only are made accessible to the public via a call-in number. To provide rapid notification of upcoming meetings and committee news, the IACC disseminates information through electronic mail listservs, Twitter, and an email newsletter.

At every IACC full committee meeting, the IACC seeks input from the public through open public comment periods. Members of the public may appear in person and present oral comments or submit written comments that are summarized during each meeting. Members of the IACC discuss the presented comments and often develop action items based on issues discussed. In addition, the committee periodically issues formal Requests for Information (RFI) to gather public input for strategic planning purposes. The last IACC RFI was issued in 2016 and was used to develop the 2016-2017 IACC Strategic Plan.

Through these various means of actively gathering public input, providing public access to meetings and calls of the IACC, providing public access to IACC documents, and disseminating information about IACC events and products, the IACC provides numerous opportunities for public involvement and continues to enhance the transparency of committee decision-making.

The National Autism Coordinator

The duties of the National Autism Coordinator (NAC) specified in the Autism CARES Act include implementation of federal ASD activities based on the recommendations of the IACC, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The first NAC was appointed by the HHS Secretary in April 2016. In October 2016, the NAC convened an Interagency Workgroup (IWG) to provide input into the Report to Congress on Young Adults and Transitioning Youth with ASD, which is required by the Autism CARES Act. This report was completed and submitted to Congress in August 2017. The report recommends that increased research efforts, as well as service and resource expansion, should be considered to better serve the population of transitioning youth and adults with ASD.

A new NAC was appointed in February 2018, and the IWG was reconvened in June 2018 as the Federal Interagency Workgroup on ASD (FIWA). The goal of FIWA is to address the recommendations of the Report on Young Adults and Transitioning Youth with ASD as well as other important federal ASD issues.

The agencies and departments currently represented on the FIWA include:

• Department of Health and Human Services (HHS)
  
  • Administration for Children and Families (ACF)
  • Administration for Community Living (ACL)
  • Agency for Healthcare Research and Quality (AHRQ)
  • Assistant Secretary for Planning and Evaluation (ASPE)
  • Centers for Disease Control and Prevention (CDC)
  • Centers for Medicare & Medicaid Services (CMS)
  • Health Resources and Services Administration (HRSA)
  • Indian Health Service (IHS)
  • National Institutes of Health (NIH)
  • Substance Abuse and Mental Health Services Administration (SAMHSA)
• Department of Education (ED)
• Department of Defense (DoD)
• Department of Justice (DOJ)
• Department of Justice (DOL)
• Department of Transportation (DOT)
• Environmental Protection Agency (EPA)
• Social Security Administration (SSA)