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

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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 Combating Autism Act 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.
This statement is based on GAO's November 2013 report, GAO-14-16 , with selected updates. It discusses federal autism activities, including (1) the extent to which federal agencies fund potentially duplicative autism research, and (2) the extent to which IACC and agencies coordinate and monitor federal autism activities. GAO analyzed agencies' data and documents, and interviewed federal agency officials.
section_title: What GAO Found
paragraphs: 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 other instances funding similar research may lead to unnecessary duplication. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency and at least 4 agencies funded autism research in the same research area.
The IACC and federal agencies may have missed opportunities to coordinate and reduce the risk of duplicating effort and resources. GAO found that the IACC is not focused on the prevention of duplication, and its efforts to coordinate the Department of Health and Human Services' (HHS) autism research and monitor all federal autism activities were hindered by limitations with the data it collects. Apart from federal agencies' participation on the IACC, there were limited instances of agency coordination, and the agencies did not have robust or routine procedures for monitoring federal autism activities.
section_title: What GAO Recommends
paragraphs: GAO recommended in November 2013 that HHS improve IACC data to enhance coordination and monitoring. HHS disagreed and stated its efforts were already adequate. GAO also recommended that DOD, Education, HHS, and NSF improve coordination. The agencies supported improved coordination, but most disputed that duplication occurs. GAO continues to believe the recommendations are warranted and actions needed.

section_title: Letter
paragraphs: I am pleased to be here to discuss our recent work examining federally  funded autism activities. Autism is a complex developmental disorder that  begins during early childhood, characterized by impaired social  interactions, problems with verbal and nonverbal communication, and  repetitive behaviors, or by severely limited activities and interests. The  most recent estimates from the Centers for Disease Control and  Prevention (CDC) indicate that at least 1 in 68 children in the United  States have been identified as having autism. There is no single known  cause of autism and there is no known cure. However, research shows  that early intervention and treatment services can greatly improve a  child’s development.
The 12 agencies are the Department of Defense (DOD); Department of Education  (Education); Environmental Protection Agency (EPA); National Science Foundation (NSF);  and 8 agencies within the Department of Health and Human Services—Administration for  Children and Families (ACF), Administration for Community Living (ACL), Agency for  Healthcare Research and Quality (AHRQ), CDC, Centers for Medicare & Medicaid  Services (CMS), Health Resources and Services Administration (HRSA), National  Institutes of Health (NIH), and the Substance Abuse and Mental Health Services  Administration (SAMHSA).
Human Services (HHS) and monitor federal activities related to autism  across the federal government. To fulfill these requirements, the IACC  holds meetings and has issued several reports including a strategic plan  for autism research, which the CAA requires the IACC to develop and  annually update. The strategic plan is organized into seven research  areas with specific short- and long-term research objectives, and contains  a total of 78 objectives. The IACC also issues an annual Autism  Spectrum Disorder Research Portfolio Analysis Report. This report is  organized by the same seven research areas and includes information on  research projects funded by federal and nonfederal entities related to  autism, including budget information, for a single fiscal year. The  National Institutes of Health (NIH)—an agency within HHS—created the  Office of Autism Research Coordination (OARC) to provide administrative  support to the IACC. On behalf of the IACC, OARC periodically collects  data from agencies on the autism research projects they fund, helps  agencies categorize this research to the specific strategic plan objectives,  and prepares the portfolio analysis, which includes this data.
Having multiple agencies fund research in the same area can be  appropriate and necessary—for example, for purposes of replicating or  corroborating prior research results. It can also be advantageous to be  able to draw on different expertise found in multiple agencies. One such  advantage is that agencies may be better able to tailor research or other  programs to suit their specific missions and needs. However, the  involvement of multiple agencies can also make it challenging to identify  gaps and efficiently allocate resources across the federal government.
My remarks today will focus on two areas: (1) the extent to which federal  agencies fund potentially duplicative autism research and other autism- related activities, and (2) the extent to which the IACC and agencies  coordinate and monitor federal autism activities. My remarks are based  primarily on our report, released in November 2013, entitled Federal  Autism Activities: Better Data and More Coordination Needed to Help  Avoid the Potential for Unnecessary Duplication. For this report, we  collected data on the research federal agencies funded, including funding  amounts, from fiscal years 2008 to 2012 through database searches,  review of related documentation, interviews, as well as through the use of  data that agencies submitted to OARC. To determine potential  duplication in autism research, we identified research projects that were  categorized to the same strategic plan objectives. For projects that were  not categorized to a specific objective, but were categorized to one of the  seven research areas, we assessed duplication based on whether they  were categorized to the same research area. Determining that projects  were categorized to the same strategic plan objective or research area  suggests potential—but not actual—duplication. Determining actual  duplication for research projects would require a more extensive review  and was beyond the scope of our study. Additionally, we collected data  on non-research activities funded by federal agencies from fiscal years  2008 through 2011, and assessed whether there was actual duplication of  these activities using the framework we established in our previous work.  This framework considers duplication to have occurred when two or more  agencies fund the same activities that target the same users.
To assess the extent to which the IACC and agencies coordinate and  monitor federal autism activities, we reviewed IACC documents, including  the strategic plan, and interviewed OARC officials and officials from   10 federal agencies and select nonfederal IACC members. We assessed  the IACC’s and agencies’ coordination and monitoring activities against  criteria established by our prior work. These criteria include key practices  for interagency coordination and collaboration, and federal internal control  standards related to communicating with external entities, including other  federal agencies, and measuring progress on organizational efforts, such  as those established through strategic plans.
We conducted the work on which this statement is based, and made  selected updates in May 2014, in accordance with generally accepted  government auditing standards. and perform the audit to obtain sufficient, appropriate evidence to provide  a reasonable basis for our findings and conclusions based on our audit  objectives. We believe that the evidence obtained provides a reasonable  basis for our findings and conclusions based on our audit objectives.  Further details on our scope and methodology are included in our  November 2013 report.
subsections: section_title: The Majority of Federally-Funded Autism Research Had the Potential to Be Duplicative
paragraphs: 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.
section_title: The IACC’s and Federal Agencies’ Efforts to Coordinate and Monitor Federal Autism Activities Were Limited
paragraphs: 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.
section_title: GAO Contact and Staff Acknowledgements
paragraphs: 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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