Federal Autism Activities: Funding and Coordination Efforts
Released: 2014-05-20T00:00:00

Letter

The Majority of Federally-Funded Autism Research Had the Potential to Be Duplicative

Our updates were limited to reviewing certain publically available information, such as the most recent strategic plan released by the IACC. spectrum of adults with autism. Funding autism research on the same topic may be appropriate and necessary—for example, for purposes of replicating or corroborating results—but in some instances, funding similar autism research may lead to unnecessary duplication and inefficient use of funds.

Most agency officials we spoke with said that they consider the research funded by their agencies to be different than autism research funded by other agencies; however, we found that each research area included projects funded by at least four agencies. For example, the diagnosis research area included projects funded by seven different agencies. The most commonly funded projects were in the area of biology (423 projects), followed by treatment and interventions (253 projects), and causes (159 projects). NIH funded a majority of the autism research projects in five of the seven research areas. (See fig. 1.)

Five agencies that funded non-research autism-related activities from fiscal years 2008 through 2011—Administration for Community Living (ACL), CDC, Department of Defense (DOD), Department of Education (Education), and the Health Resources and Services Administration (HRSA)—funded activities that were not duplicative. HRSA and Education both funded training activities related to autism. HRSA’s activities included training health care professionals, such as pediatric practitioners, residents, and graduate students, to provide evidence- based services to children with autism and other developmental disabilities and their families. The activities also included training specialists to provide comprehensive diagnostic evaluations to address the shortage of professionals who can confirm or rule out an autism diagnosis. Education’s training activities focused on the education setting; for example, to prepare personnel in special education, related services, early intervention, and regular education to work with children with disabilities, including autism. Additionally, DOD and ACL both funded a publicly available website to provide information on services available to individuals with autism. DOD’s website was developed for military families to provide them with information on the educational services that are close to specific military installations in select states, while the ACL website is broader by focusing on all individuals with autism and other developmental disabilities, their families, and other targeted key stakeholders concerned with autism. Finally, we determined that CDC is the only agency funding an awareness campaign on autism and other developmental disabilities. CDC’s Learn the Signs. Act Early. campaign promotes awareness of healthy developmental milestones in early childhood, the importance of tracking each child’s development, and the importance of acting early if there are concerns.

The IACC’s and Federal Agencies’ Efforts to Coordinate and Monitor Federal Autism Activities Were Limited

We noted in our November 2013 report that the IACC and federal agencies may have missed opportunities to coordinate federal autism activities and reduce the risk of duplication of effort and resources. Although the CAA requires the IACC to coordinate HHS autism activities and monitor federal autism activities, OARC officials stated that the prevention of duplication among individual projects in agency portfolios is not specified in the CAA as one of the IACC’s statutory responsibilities and therefore is not a focus of the IACC. OARC officials stated that it was up to the individual federal agencies to use the information contained in the IACC’s strategic plan and portfolio analysis to prevent duplication. Officials from three federal agencies—CDC, DOD, and NIH—told us that they use the strategic plan and portfolio analysis, which are key documents used by the IACC to coordinate and monitor federal autism activities, when setting priorities for their autism programs and to learn of autism activities conducted by other agencies. OARC officials acknowledged that the IACC could choose to use data from the portfolio analysis as the basis for specific recommendations regarding areas where interagency coordination could be increased, but to date this has not occurred. OARC officials stated that they do not consider it to be their responsibility to review the data that they collect on behalf of the IACC for duplication or for coordination opportunities. Instead, they said that they fulfill their role in assisting the IACC in its cross-agency coordination activities in other ways, such as by facilitating interagency communication and gathering information.

In our November 2013 report, we recommended that the Secretary of Health and Human Services direct the IACC and NIH, in support of the IACC, to identify projects through their monitoring of federal autism activities— including OARC’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.

HHS did not concur with our recommendation. The agency stated that such an analysis by the IACC to identify duplication would not likely provide the detail needed to determine actual duplication, and that the role of the IACC should not include identification of autism-related projects for elimination. We agree that further analysis would be needed to identify actual duplication. While the strategic plan objectives, which represent broad and complex areas of research, are useful to identify the potential for unnecessary duplication, we believe that such identification is worthwhile as it can effectively lead to further review by the funding agencies to ensure funds are carefully spent. Agencies can review specific project information to confirm whether research projects associated with an objective are, for example, necessary to replicate prior research results. While funding more than one study per objective may often be worthwhile and appropriate, this type of analysis by agencies would help provide assurance that agencies are not wasting federal resources due to unnecessary duplication of effort. Further, such an analysis could help identify research needs—such as research that is needed to complement or follow-up prior research, or research that requires further corroboration—and move autism research forward in a coordinated manner. We also question the purpose of using federal resources to collect data, if the data are not then carefully examined to ensure federal funds are being used appropriately and efficiently.

Further, we found that the IACC’s efforts to coordinate HHS autism research and monitor all federal autism activities were hindered due to limitations with the data it collects. For example, the guidance and methodology for determining what projects constitute research, and therefore should be included in the portfolio analysis, has changed over the years. As a result, the projects included in the portfolio analysis have varied. Such inconsistency makes it difficult to accurately determine how much an increase in the funding of autism research was due to an actual increase in research versus the inclusion of more projects in the analysis. Additionally, the portfolio analysis and strategic plan contain limited information on non-research autism-related activities, and the IACC did not have a mechanism to collect information on such activities.

In our November 2013 report, we made recommendations that the Secretary of Health and Human Services direct the IACC and NIH, in support of the IACC, to provide consistent guidance to federal agencies when collecting data for the portfolio analysis so that information can be more easily and accurately compared over multiple years; and 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.

HHS did not concur with these recommendations. HHS emphasized that, when collecting data for the portfolio analysis, it has balanced the need for consistency with the need to be responsive to feedback from the IACC and from those participating in the portfolio analysis. While we agree with HHS that it is important to be responsive to feedback and make adjustments to guidance as necessary to improve data collection, we believe that annual changes of the type we observed are not productive. Guidance should be developed so that accurate, consistent, and meaningful comparisons of changes in federal funding of autism research can be made over time and used to inform future funding decisions. Additionally, HHS commented that information on non-research autism- related activities was publicly accessible through a report to Congress that the CAA, and its reauthorization in 2011, required of HHS. While this document could be a starting point from which the IACC could begin to regularly catalog non-research autism-related activities, we believe that having a document or database that contains current and regularly- updated information on these activities is an important aspect of fulfilling the IACC's responsibility to monitor all federal autism activities, not just research.

We also reported in November 2013 that the data used by the IACC was outdated and not tracked over time, and therefore not useful for measuring progress on the strategic plan objectives or identifying gaps in current research needs. Although the IACC did not examine research projects over time, our analysis found that, when looking across multiple years, some agencies funded more autism research projects than were suggested in the associated strategic plan objective, whereas other objectives were not funded by an agency. Recently, in April 2014, the IACC released an update of its strategic plan. This plan included the number of research projects funded from fiscal years 2008 through 2012 under each objective, and the corresponding funding amounts, which may help identify those objectives that have received more funding than others. Although OARC collected specific information on the more recently funded projects—those funded in fiscal years 2011 and 2012— this information was not included in the plan. Detailed project information is needed to effectively coordinate and monitor autism research across the federal government and avoid duplication.

Principal investigators are typically individuals designated by the applicant organization, such as a university, to have the appropriate level of authority and responsibility to direct the project or program to be supported by the award. not provide information indicating that NIH has policies requiring program officials to actually search this database before awarding each research grant. Several agency officials also stated that they rely on their peer reviewers, other experts, and project officers to have knowledge of the current autism research environment. As established in our recent duplication work, it is important for agencies that fund research on topics of common interest, such as autism, to monitor each others’ activities. Such monitoring helps maximize effectiveness and efficiency of federal investments, and minimize the potential for the inefficient use of federal resources due to unnecessary duplication.

To promote better coordination among federal agencies that fund autism research and avoid the potential for unnecessary duplication before research projects are funded, we recommended that the Secretary of Health and Human Services, the Secretary of Defense, the Secretary of Education, and the Director of the National Science Foundation (NSF) 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. DOD concurred with our recommendation to improve coordination among federal agencies, and comments from Education, HHS, and NSF suggested that these agencies support improving the coordination of federal autism research activities. However, Education, HHS, and NSF disputed that any duplication occurs. We agree that more information on the specific projects funded within each objective would need to be assessed in order to determine actual duplication. However, the fact that research is categorized to the same objectives suggests that there may be duplicative projects being funded. During the course of our work, Education, HHS, and NSF did not provide any information to show that they had reviewed research projects to ensure that they were not unnecessarily duplicative.

Chairman Mica, Ranking Member Connolly, and Members of the Subcommittee, this concludes my prepared statement. I would be pleased to respond to any questions that you may have.

GAO Contact and Staff Acknowledgements

For questions about this statement, please contact me at (202) 512-7114 or crossem@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this statement. GAO staff who made key contributions to this statement include Geri Redican-Bigott, Assistant Director; Deirdre Brown; Sandra George; Drew Long; and Sarah Resavy.

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