The Role of the Interagency Autism Coordinating Committee

The current Interagency Autism Coordinating Committee (IACC) was established by Congress under the Combating Autism Act (CAA; P.L. 109-416, PDF - 142 KB) and reauthorized in 2011 under the Combating Autism Reauthorization Act (CARA; P.L. 112-32, PDF - 121 KB) to provide advice to the Secretary of Health and Human Services (HHS) concerning issues related to autism spectrum disorder (ASD) and to coordinate all ASD-related efforts within HHS. The IACC serves as a forum for public input on issues related to ASD, and the committee uses this input to inform its activities, including the annual update of the IACC Strategic Plan for ASD Research, which serves as a guide for federal agencies in planning ASD-related research programs and activities, and the development of advisory letters and public statement on a variety of issues that are relevant to individuals and families affected by ASD.⁴ 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.⁵

The Combating Autism Act (CAA) (PDF - 142 KB) outlines the membership of the IACC, which includes both representatives of federal agencies and public members representing a variety of stakeholder groups within the autism community. The current committee is composed of public members including family members of children and adults with ASD, individuals with ASD, leaders of national advocacy and research organizations and service providers, as well as officials from the following federal agencies and offices that address ASD research or 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), Department of Defense (DoD), Department of Education (ED), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), five Institutes/Centers of the National Institutes of Health (NIH), and the NIH Director.⁶ 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) at the National Institute of Mental Health, NIH, was established shortly after the formation of the current IACC to provide the committee with logistical coordination and policy and communications support to enable it to carry out its Congressionally-mandated responsibilities.

In addition to the full committee, the IACC currently has two subcommittees and several planning groups:

• IACC Subcommittee for Basic and Translational Research - addresses issues related to biomedical and behavioral research, research collaborations and resources, and other related topics.
• IACC Subcommittee for Services Research and Policy - addresses issues related to services research and services policy, including services provision, services research, access, housing, transition, social inclusion, health disparities, healthcare costs, the Affordable Care Act and safety issues.

IACC Fulfillment of CAA Mandates

The activities of the IACC described above fulfill the committee's Congressional mandates under the CAA:

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

The IACC's original Strategic Plan was completed in 2009, and in 2010, 2011, and 2012, the IACC provided annual Strategic Plan updates. These documents were submitted to Congress as required.⁷

The IACC Strategic Plan is organized around seven consumer-based questions:

1. When should I be concerned? (Diagnosis)
2. How can I understand what is happening? (Underlying biology of ASD)
3. What caused this to happen and can it be prevented? (Risk factors)
4. Which treatments and interventions will help? (Treatments and interventions)
5. Where can I turn for services? (Services for children)
6. What does the future hold for adults? (Issues that affect people with ASD across the lifespan)
7. What other infrastructure and surveillance needs must be met? (Research infrastructure, workforce, surveillance, and information dissemination)

Each of the seven chapters of the IACC Strategic Plan describes the state of research and related activities in that area, the most pressing needs of the community and the research field in that area, the recent progress achieved, and what gaps and 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 and 2012.⁸ The most recent Summary of Advances documents provide a short summary of each of the top 20 advances identified by the committee in each year, covering each of the seven question areas in the IACC Strategic Plan which roughly correlate with the specific areas mentioned in the law: causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder.

"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 and private organizations that are involved in ASD research and services activities, allowing them to stay abreast of recent developments and best practices. The IACC also reviews the research literature each year for its annual Strategic Plan update and to prepare its annual Summary of Advances in ASD Research.

The IACC annually requests that the NIH Office of Autism Research Coordination prepare an ASD Research Portfolio Analysis Report, which analyzes information about autism-related projects funded by federal agencies and private organizations.⁹ The report describes progress that is being made toward achieving the objectives set forth in the IACC Strategic Plan for ASD Research 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 has served as a valuable source of information about ASD research funding to both federal agencies and private research organizations. OARC is currently preparing a report on 2011 and 2012 funding, to be released in 2014.

The 2008, 2009 and 2010 ASD Research Portfolio Analysis Reports are available on the IACC website, and all the data collected for those reports have been made available to the public in an online database, the IACC/OARC Portfolio Analysis Web Tool, which provides members of the public with a user-friendly way to search, sort and view analysis 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 2011 IACC Strategic Plan for ASD Research contains 78 objectives that serve as recommendations for further efforts in specific priority areas. In addition to the HHS Secretary, the NIH Director, as required in the CAA, and all the federal agency representatives on the committee receive the IACC Strategic Plan and its updates for use in planning activities within their agencies. The Strategic Plan is also sent to Congress and posted on the IACC website for public access.¹⁰

The committee has also used advisory letters to the HHS Secretary as a method for providing advice. The committee has written three letters to the Secretary, advising her of emerging issues in the ASD community and recommending changes in federal activities and improved interagency coordination on these issues to benefit the autism community: Letter to the Secretary on Wandering (2011), Letter to the Secretary on Seclusion and Restraint (2011), Letter to the Secretary on Health Coverage (2013).

In 2012 the IACC issued a Statement on the Sandy Hook Tragedy as a mode of communicating their opinions and advice to the Secretary, agencies and the community. The statement supported the prevention of violence and other undesirable outcomes through availability and accessibility of appropriate medical, educational, mental health and community supports for people with ASD.

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

The table below highlights IACC full committee, subcommittee, workgroup and planning group, 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. The committee initially formed in 2007 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 Meetings and Events 2007-2013

Meeting	2007	2008	2009	2010	2011	2012	2013	Totals
Meeting Full Committee	2007 1	2008 5	2009 7	2010 5	2011 4	2012 4	2013 5	Total 31
Meeting Subcommittee	2007 0	2008 5	2009 8	2010 10	2011 5	2012 4	2013 3	Total 35
Meeting Planning Groups/Workgroups	2007 0	2008 5	2009 0	2010 0	2011 0	2012 12	2013 17	Total 34
Meeting Workshops	2007 0	2008 4	2009 1	2010 1	2011 1	2012 0	2013 1	Total 8
Meeting Other Events	2007 0	2008 1	2009 1	2010 0	2011 0	2012 0	2013 0	Total 2
Meeting Totals	2007 1	2008 20	2009 17	2010 16	2011 10	2012 20	2013 26	Total 110

Table 1. This table shows the number of IACC Full Committee, Subcommittee, Workgroup and Planning Group, Workshops and other meetings and events that took place from 2007-2013.

Outreach and Transparency

The Office of Autism Research Coordination (OARC) also maintains an extensive website for the IACC in order to facilitate the ability of the public to access information about the committee, committee activities and publications. The IACC website currently posts the agenda, minutes, meeting materials, slides and transcripts from the meetings of the IACC, its subcommittees and planning groups, 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 page showing ASD-related meetings and events that are open to the public. The website will continue to add new categories of IACC materials for public access in the future.

In 2012, OARC launched a publicly accessible database called the IACC/OARC ASD Research Portfolio Analysis Web Tool that makes the grant and other project data for all ASD research projects included in the IACC ASD Research Portfolio Analysis Report available to the public. The database 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.¹¹

In addition, in 2009 OARC began conducting live webcasts of all full committee meetings and then archiving them on the site to enhance public access and participation in meetings. To provide rapid notification of upcoming meetings and committee news, the IACC disseminates information through electronic mail listservs, the microblogging site Twitter, and RSS feeds of events from the IACC website. As a federal advisory committee, the IACC complies with the Federal Advisory Committee Act (FACA) to ensure that every in-person meeting of the committee or subcommittees is open to the public, and several remote access options are available at each meeting to enable the public to listen to or watch proceedings through conference calls, webcasts or webinars. Committee, subcommittee and other IACC-related meetings conducted by conference call only are also made accessible to the public via a call-in number.

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.