Federal Autism Activities:

Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication

GAO-14-16: Published: Nov 20, 2013. Publicly Released: Nov 20, 2013.

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Marcia G. Crosse
(202) 512-7114
crossem@gao.gov

 

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What GAO Found

Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the Interagency Autism Coordinating Committee's (IACC) strategic plan. Funding similar research on the same topic is sometimes appropriate--for example, for purposes of replicating or corroborating results--but in some instances, funding similar research may lead to unnecessary duplication. The potentially duplicative research projects included those funded by the Department of Defense (DOD), Department of Education (Education), National Science Foundation (NSF), and agencies within the Department of Health and Human Services (HHS)--Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services, Health Resources and Services Administration, National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency. For example, 5 agencies awarded approximately $15.2 million for 20 autism research projects related to 1 objective to test methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings.

The IACC's and federal agencies' efforts to coordinate and monitor federal autism activities were limited. The IACC--composed of federal and nonfederal members--met regularly and issued several reports, such as a strategic plan and portfolio analysis--a report that provides information on autism research projects, organized by the strategic plan objectives. The IACC has also released a companion database to its portfolio analysis. However, IACC members provided mixed views on the usefulness of the IACC's meetings, strategic plan, and portfolio analysis in aiding coordination and monitoring. While three agencies--CDC, DOD, and NIH--regularly used the committee's strategic plan and portfolio analysis, others did not. Shortcomings in the data the IACC used for its portfolio analysis limited its ability to coordinate HHS autism activities and monitor federal autism activities--as required by the Combating Autism Act of 2006 (CAA). For example, GAO found that the data used by the IACC was outdated, not tracked over time, inconsistent, and incomplete. These weaknesses limited the IACC's ability to monitor its progress on its coordination and monitoring efforts--which, in prior work, GAO established as a best practice for inter-agency collaboration, as well as a federal internal control standard. In addition, these weaknesses limited agencies' ability to use these data to identify coordination opportunities and avoid the potential for unnecessary duplication. Such information is important because of the involvement of multiple agencies. Lastly, apart from their participation on the IACC, there were limited instances of agencies coordinating, and agencies did not have robust or routine procedures for monitoring federal autism activities. Per federal internal control standards, agencies should establish a means of communicating with other agencies; this is important to maximize the efficiency of the federal autism investment and minimize the potential for unnecessary duplication.

Why GAO Did This Study

Autism—a developmental disorder involving communication and social impairment—is an important public health concern. From fiscal years 2008 through 2012, 12 federal agencies awarded at least $1.4 billion to support autism research and other autism-related activities. The CAA directed the IACC to coordinate HHS autism activities and monitor all federal autism activities. It also required the IACC to develop and annually update a strategic plan for autism research. This plan is organized into 7 research areas that contain specific objectives.

GAO was asked to examine federal autism efforts. In this report, GAO (1) analyzes the extent to which federal agencies fund potentially duplicative autism research, and (2) assesses the extent to which IACC and agencies coordinate and monitor federal autism activities. GAO analyzed agencies’ data and documents, and interviewed federal agency officials and select nonfederal IACC members.

What GAO Recommends

GAO is recommending that (1) HHS improve the usefulness of IACC data to enhance coordination and monitoring of federal autism activities, and (2) DOD, Education, HHS, and NSF improve their coordination of autism research. HHS disagreed with the first recommendation stating that it was already making adequate efforts. The agencies supported the need for improved coordination but, except for DOD, disputed that any duplication occurs. GAO continues to believe the recommendations are warranted as discussed in the report.

For more information, contact Marcia Crosse at (202) 512-7114 or crossem@gao.gov.

Recommendations for Executive Action

  1. Status: Open

    Comments: HHS continues to disagree with this recommendation. In May 2016, we issued another report on federal autism activities (GAO-16-446). We reported that NIH released fiscal year 2011 and 2012 data on federal autism research in April 2016. Specifically, these data were released into the Autism Spectrum Disorder Research Portfolio Analysis Web Tool, the IACC's online database on autism research. Prior to this new release, the Web Tool contained fiscal year 2008 through 2010 data. We also reported that NIH officials told us that they have collected data on autism research that was federally funded in fiscal year 2013 and plan to release that data in the second half of calendar year 2016. GAO continues to believe that the issuance of consistent guidance could enhance coordination and monitoring and that implementing this recommendation would be beneficial.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to provide consistent guidance to federal agencies when collecting data for the portfolio analysis and web tool so that information can be more easily and accurately compared over multiple years.

    Agency Affected: Department of Health and Human Services

  2. Status: Open

    Comments: HHS continues to disagree with this recommendation. However, GAO believes that having a document or database that contains current information on these non-research activities is an important aspect of fulfilling the IACC's responsibility to monitor all federal autism activities, not just research. In May 2016, we issued another report on federal autism activities (GAO-16-446). During our work for this engagement, we found that HHS and the IACC have recently taken actions required by the Autism CARES Act that could help coordinate federal non-research autism activities and implement our November 2013 recommendation. First, as directed by the act, in April 2016, the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. Secondly, the Act required the development of a strategic plan for autism research, including for services and supports as practicable, for individuals with autism and the families of such individuals. The plan is to include recommendations to ensure that autism research, and services and support activities to the extent practicable, of HHS and other federal departments and agencies are not unnecessarily duplicative. During meetings in November 2015 and in January and April 2016, NIH staff and IACC members discussed updating the strategic plan and the aforementioned requirements, including how to include non-research autism-related activities into the strategic plan. At the time of the issuance of our new report in May 2016, no specific details for how this will be accomplished were identified. We acknowledge the steps taken by HHS and the IACC in response to the Autism CARES Act; however, we believe continued action is needed to develop these initial steps into methods for identifying and monitoring non-research autism-related activities funded by the federal government. We believe that continued fulfillment of provisions in the Autism CARES Act could help the department implement GAO's 2013 recommendation.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to create a document or database that provides information on non-research autism-related activities funded by the federal government and make this document or database publicly available.

    Agency Affected: Department of Health and Human Services

  3. Status: Open

    Comments: HHS continues to disagree with this recommendation. GAO continues to question the purpose of devoting federal resources to collecting these data, if they are not then used to ensure federal funds are used appropriately. In May 2016, we issued another report on federal autism activities (GAO-16-446), which among other topics, examined the steps HHS and other federal agencies have taken to improve coordination and help avoid unnecessary duplication in autism research. We reported that HHS has recently taken actions required by the Autism CARES Act that could help coordinate federal autism research and implement our November 2013 recommendation. First, as directed by the act, in April 2016 the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. Second, the Autism Cares Act requires that the IACC's strategic plan include recommendations to ensure that autism research funded by HHS and other federal agencies is not unnecessarily duplicative. During meetings in November 2015 and in January and April 2016, NIH staff and IACC members discussed updating the strategic plan. The requirement to include the aforementioned recommendations was discussed; however, no specific details for how this will be accomplished were identified. We acknowledge the steps taken by HHS and the IACC in response to the Autism CARES Act; however, we believe that continued action is needed to develop these initial steps into methods for identifying, monitoring, and coordinating federal autism research that are consistently applied. We believe that continued fulfillment of provisions in the Autism CARES Act could help the department implement GAO's 2013 recommendation.

    Recommendation: To improve the usefulness of IACC data and enhance its efforts to coordinate HHS autism activities and monitor all federally funded autism activities, the Secretary of Health and Human Services should direct the IACC and NIH, in support of the IACC, to identify projects through its monitoring of federal autism activities--including Office of Autism Research Coordination's annual collection of data for the portfolio analysis and the IACC's annual process to update the strategic plan--that may result in unnecessary duplication and thus may be candidates for consolidation or elimination, and identify potential coordination opportunities among agencies.

    Agency Affected: Department of Health and Human Services

  4. Status: Open

    Comments: In July 2015 Education stated that it has reached out to the Department of Health and Human Services (HHS) and is awaiting guidance on coordination from HHS. In May 2016, we issued another report on federal autism activities (GAO-16-446), which among other topics, examined the steps federal agencies, including Education, have taken to improve coordination and help avoid unnecessary duplication in autism research. We reported that Education officials told us that they have reached out to HHS and are awaiting guidance on coordination from HHS and in the interim they will continue to participate in IACC meetings. Education officials also stated that the department anticipates funding, pending congressional appropriations, model demonstrations projects focused on autism. These projects will build on existing research on promising evidence-based practices for autism by identifying challenges associated with their implementation. According to Education officials, the department will coordinate with the IACC and review relevant research prior to soliciting applications related to these research projects. We acknowledge the steps taken by Education; however, we believe that continued action is needed to develop these initial steps into methods for identifying, monitoring, and coordinating federal autism research that are consistently applied. Further, as directed by the Autism Cares Act, in April 2016 the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. We believe that as the appointed Autism Coordinator continues to fulfill his role, including coordinating with Education as required, this could help Education implement GAO's 2013 recommendation.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Education

  5. Status: Open

    Comments: In May 2016, we issued another report on federal autism activities (GAO-16-446), which among other topics, examined the steps federal agencies, including DOD, have taken to improve coordination and help avoid unnecessary duplication in autism research. We reported that DOD officials told us that the department has finalized an interagency agreement with NIH to complete a pilot study aimed at developing requirements and testing the feasibility of transferring DOD medical research application data to a NIH data system. According to DOD officials, this transfer of data would allow multiple agencies and the public to view research application data to assist in the identification of potential duplication and facilitate funding decisions. We acknowledge these initial steps taken by DOD; however, we believe that continued action is needed to develop these initial steps into methods for identifying, monitoring, and coordinating federal autism research that are consistently applied. Further, as directed by the Autism Cares Act, in April 2016 the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. We believe that as the appointed Autism Coordinator continues to fulfill his role, including coordinating with DOD as required, this could help DOD implement GAO's 2013 recommendation.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Defense

  6. Status: Open

    Comments: HHS continues to disagree with this recommendation. However, GAO stands by its conclusion that the monitoring of federal autism research funded by other federal agencies is limited. In May 2016, we issued another report on federal autism activities (GAO-16-446), which among other topics, examined the steps HHS and other federal agencies have taken to improve coordination and help avoid unnecessary duplication in autism research. We reported that although HHS continues to disagree that our recommendation to develop methods for improved cross-agency coordination was warranted, the department has recently taken actions required by the Autism CARES Act that could help coordinate federal autism research and implement our November 2013 recommendation. Specifically, as directed by the act, in April 2016 the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. Second, the Autism Cares Act requires that the IACC's strategic plan include recommendations to ensure that autism research funded by HHS and other federal agencies is not unnecessarily duplicative. During meetings in November 2015 and in January and April 2016, NIH staff and IACC members discussed updating the strategic plan. The requirement to include the aforementioned recommendations was discussed; however, no specific details for how this will be accomplished were identified. We acknowledge the steps taken by HHS and the IACC in response to the Autism CARES Act; however, we believe that continued action is needed to develop these initial steps into methods for identifying, monitoring, and coordinating federal autism research that are consistently applied. We believe that continued fulfillment of provisions in the Autism CARES Act could help the department implement GAO's 2013 recommendation.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: Department of Health and Human Services

  7. Status: Open

    Comments: NSF has stated that it recognizes the importance of avoiding unnecessary duplication. In May 2016, we issued another report on federal autism activities (GAO-16-446), which among other topics, examined the steps federal agencies, including NSF, have taken to improve coordination and help avoid unnecessary duplication in autism research. We reported that even though the agency is not a member of the IACC, NSF officials told us that they observe IACC meetings when convened and check the IACC's Web Tool to monitor autism research funded by other federal agencies and to help avoid unnecessarily duplicative research. Further, as directed by the Autism Cares Act, in April 2016 the Secretary of Health and Human Services designated an official to serve as the Autism Coordinator to oversee national autism research, services, and support activities and ensure that autism activities funded by HHS and other federal agencies are not unnecessarily duplicative. We acknowledge the steps taken by NSF; however, we believe that continued action is needed to develop these initial steps into methods for identifying, monitoring, and coordinating federal autism research that are consistently applied. As the appointed Autism Coordinator continues to fulfill his role, including coordinating with Defense as required, this could help Defense implement GAO's 2013 recommendation.

    Recommendation: To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of NSF should each determine methods for identifying and monitoring the autism research conducted by other agencies, including by taking full advantage of monitoring data the IACC develops and makes available.

    Agency Affected: National Science Foundation

 

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