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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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 the spring of 2016 NIH released fiscal years 2011 and 2012 data, and in the spring of 2017, it released fiscal year 2013 data and made these data available through the IACC Web Tool. 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 IACC meetings in 2016, NIH staff and IACC members discussed updating the strategic plan to include services and supports. This plan is expected to be published in calendar year 2017. 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. However, GAO questions the purpose and value 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 IACC meetings in 2016, NIH staff and IACC members discussed updating the strategic plan, including the aforementioned requirement. This plan is expected to be published in calendar year 2017. We acknowledge the steps taken by HHS and the IACC in response to the Autism CARES Act; however, until the designated Autism Coordinator takes steps to meet the act's requirements and the forthcoming strategic plan is published, there is a risk that opportunities to coordinate and create efficiencies and avoid unnecessary duplication in federal autism research will not be seized. 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: Closed - Implemented

    Comments: Department of Education (Education) officials told GAO in November 2016 that the department?s National Center for Special Education Research (NCSER) continues to work with other groups in Education, as well as with other agencies such as HHS and NSF, formally and informally, to better identify the federally funded research on children with disabilities, including autism. These collaborative efforts include NCSER's involvement in the Interagency Committee on Disability Research, which plans to establish a publicly accessible government-wide inventory of all disability, independent living, and rehabilitation research, including research involving individuals with autism. This inventory should be accessible to the public by 2019. Further, in February 2017, Education stated that it plans to continue to be an active participant in all IACC activities. For example, Education has contributed to the IACC's report to Congress that is under development by the HHS Autism Coordinator. Lastly, in March 2016, the department stated that it would review relevant research prior to inviting applications related to autism research projects.

    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: Closed - Implemented

    Comments: Officials from the Department of Defense's (DOD) Congressionally Directed Medical Research Programs (CDMRP) told GAO in November 2016 that it has implemented a data-sharing process with the National Institutes of Health (NIH). CDMRP's Autism Research Program grant application data will be included in the NIH database that houses information on all funded grants and unfunded applications from NIH and other agencies such as the Centers for Disease Control and Prevention and the Agency for Health Research and Quality. DOD officials also provided further information on other actions taken to monitor the autism research funded by other agencies, such as database searches and utilization of all IACC publications, including the strategic plan and portfolio analysis report, to help identify gaps in autism research.

    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: Closed - Implemented

    Comments: HHS officials told GAO in November 2016 that NIH's comprehensive internal database which also includes information from other agencies is used extensively for detection of overlap or duplication of scientific content across different grantees (i.e., from different principal investigators). HHS also reiterated that NIH's internal autism coordinating committee, which is composed of five NIH institutes, meets monthly and collaboratively plans and co-funds major autism-related research initiatives and scientific workshops. The committee also reviews the IACC portfolio analysis for gaps in research when planning such activities. Lastly, HHS stated that it will continue to make full use of the monitoring data developed by IACC.

    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: Closed - Implemented

    Comments: NSF told GAO in March 2017 that the agency is exploring additional actions to avoid potentially unnecessary duplication. For example, NSF plans to routinize a data-sharing process with NIH in which information about NSF-funded autism research awards are included in the NIH database that houses information on all funded grants and unfunded applications from NIH and other agencies. NSF is also a member of the Interagency Committee on Disability Research and plans to continue to work with other agencies formally and informally to better identify federally funded research on children with disabilities, including autism. Lastly, NSF stated that it will monitor the autism research funded by other agencies by searching databases, utilizing all IACC publications, and monitoring data developed by the IACC.

    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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