Combating Autism Act: HHS Agencies Responded with New and Continuing Activities, Including Oversight
Released: 2013-02-27T00:00:00


Highlights: section_title: Why GAO Did This Study
paragraphs: CDC considers autism to be an important public health concern. In 2012, CDC reported that an estimated 1 in 88 children in the United States has been identified as having autism—a 23 percent increase from its estimate of 1 in 110 reported in 2009. Autism is a developmental disorder involving communication and social impairment. Symptoms usually become evident in early childhood. There are many suspected causes and no known cure.

HHS agencies fund educational and support services for individuals diagnosed with autism and fund research in a variety of areas, such as identifying the causes of autism and intervention options. The CAA amended sections of the Children’s Health Act of 2000 related to autism and established new requirements. The CAA, enacted in December 2006, authorized the expansion of HHS’s activities related to autism research, surveillance, prevention, intervention, and education through fiscal year 2011. The CAA authorized, but did not appropriate, federal funding to carry out these activities.

In this report, GAO (1) describes the actions that HHS agencies have taken as a result of the CAA, and (2) examines the oversight of CAA grantees. To address these objectives, GAO reviewed CAA and HHS documents and interviewed agency officials to identify the autism activities resulting from the CAA. GAO also determined the amount certain HHS agencies spent on autism activities from fiscal year 2006—prior to the CAA—through fiscal year 2011. In addition, GAO reviewed files for a random sample of CAA grantees to examine oversight from 2008 to 2011.

section_title: What GAO Found
paragraphs: Department of Health and Human Services (HHS) agencies responded to the Combating Autism Act of 2006 (CAA) by establishing some new autism activities and continuing others. The Health Resources and Services Administration (HRSA) created a new initiative to address specific directives in the CAA. Through this initiative, HRSA expanded its existing training programs by requiring grantees to include training specific to autism. It also established new autism research grants and funded new state grants to improve services for children with autism. HRSA awards its autism grants under the authority of the CAA. The National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) continued their autism activities--some of which were undertaken in response to the Children's Health Act of 2000--but did not create new programs as a direct result of the CAA. NIH continued to fund, expand, and coordinate autism research through its Autism Centers of Excellence and autism-specific grants and contracts. CDC continued to fund its regional centers of excellence for autism epidemiology and other activities, such as an awareness campaign. HHS's Interagency Autism Coordinating Committee (IACC)--reauthorized by the CAA--assumed additional responsibilities to coordinate autism efforts within HHS and restructured its membership to include more nonfederal members. NIH created the Office of Autism Research Coordination to coordinate and manage the IACC. The CAA did not appropriate funds to any HHS agency. Nevertheless, overall spending on HRSA, NIH, CDC, and IACC autism activities increased from approximately $143.6 million in fiscal year 2006 to approximately $240.4 million in fiscal year 2011.

HRSA, the only HHS agency that has awarded grants specifically as a result of the CAA, regularly collects and reviews information from grantees to oversee individual CAA grantees and programs. HRSA awarded approximately $164 million in grants to 110 CAA grantees from fiscal years 2008 to 2011; though, some of these grantees were already receiving funds prior to the CAA. To oversee these grantees, HRSA requires they regularly submit progress reports and financial reports. The agency also requires grantees to obtain prior approval before making certain changes to their projects. GAO reviewed documentation for an unbiased random sample of 22 grantees, which were representative of the 110 CAA grantees. GAO found that CAA grantees submitted all required reports. Many grantees submitted prior-approval requests for changes to their projects. Most frequently, grantees requested to carry over unobligated funds from the current year to the next budget period. GAO found that HRSA staff routinely collected and reviewed information submitted by the grantees and appropriately documented their review and approval of these submissions. HRSA also conducted site visits and provided technical assistance as a means of overseeing grantees. HRSA conducted site visits with 9 of the grantees in our sample during the period of our review, while only 2 of these were required sites visits. Besides overseeing grantees, HRSA monitors its overall CAA programs by regularly collecting performance reports from grantees. In addition, in December 2012, HRSA released a grant-management operations manual to outline its overall approach for monitoring its CAA programs.

GAO provided a draft of this report to HHS for comment. In response, HHS provided technical comments that were incorporated, as appropriate.

section_title: Letter
paragraphs: The Centers for Disease Control and Prevention (CDC) considers autism  to be an important public health concern. In March 2012, CDC—an  agency within the Department of Health and Human Services (HHS)— reported that an estimated 1 in 88 children in the United States had been  identified as having autism—a 23 percent increase from its estimate of 1  in 110 children in 2009. Autism is characterized by impaired social  interactions, problems with verbal and nonverbal communication, and  repetitive behaviors, or by severely limited activities and interests. What is  commonly known as “autism” is a group of disorders known as autism  spectrum disorders. Diagnoses include autistic disorder, a more severe  form of autism, and Asperger syndrome, a milder form of autism.

HHS agencies fund educational and support services for individuals  diagnosed with autism and fund research, such as studies to identify the  causes of autism and intervention options. Some of HHS’s autism-related  activities are performed internally by its agencies, while others are  conducted by external organizations. For example, HHS agencies award  grants to institutions to conduct autism-related research and surveillance  activities. Each HHS agency is responsible for overseeing the funds that it  awards to external organizations to ensure that they are properly and  effectively used.

To address growing concern about the increasing prevalence of autism  and to stimulate research into possible autism causes and interventions,  the Combating Autism Act of 2006 (CAA) was enacted in December  2006. The CAA authorizes the expansion of HHS’s activities related to  autism research, surveillance, prevention, intervention, and education and  authorizes funding for such activities through fiscal year 2011. You  asked us to provide information on agencies’ responses to the CAA and  oversight of CAA activities. In this report, we (1) describe the actions that  HHS agencies have taken as a result of the CAA, and (2) examine the  oversight of CAA grantees.

To describe the actions HHS agencies have taken as a result of the CAA,  we reviewed CAA and agency documents and interviewed HHS officials.  We focused our work on those HHS agencies directed to conduct autism  activities included in the CAA—the Health Resources and Services  Administration (HRSA), the National Institutes of Health (NIH), and CDC.We reviewed documents and interviewed agency officials to identify the  autism activities each agency funded, whether those activities resulted  from the CAA, and the amount spent on those activities. We included  activities in our review that the agencies funded from fiscal years 2006  through 2011. Although the CAA was enacted during fiscal year 2007, we  included fiscal year 2006 in our analysis to help determine the extent to  which these agencies’ activities and funding for autism activities changed  following the enactment of the CAA.

This guidance includes: HHS, Awarding Agency Grants Administration Manual (2007);  HHS, Grants Policy Statement (2007); and HRSA, Office of Federal Assistance  Management, Division of Grants Management Operations, Operational & Procedures  Manual (2009). interviewed agency officials about (1) policies and procedures for  overseeing grantees and required oversight documentation, (2) the roles  and responsibilities of various agency staff in the oversight process, and  (3) grantee requirements. Lastly, we compared the grantee monitoring  processes described by agency officials and documents to actual  oversight activities. To do this, we selected an unbiased random sample  of 20 percent of the CAA grantees—22 of the 110—funded between 2008  and 2011 and examined grant files and related documents. Our file  review of the selected grantees included a review of required reports and  requests grantees submitted; oversight of such reports and requests; and  other documentation, such as site visit summaries, for the grants awarded  in fiscal years 2008 through 2011. We reviewed documentation located in  two data systems—the Electronic Handbook (EHB) and the Discretionary  Grant Information System—that, according to agency officials, contain all  significant documentation related to monitoring CAA grantees.conduct this file review, we developed and used a data-collection  instrument to assess whether the files included evidence of required  monitoring and key monitoring documents. For example, we reviewed  whether grantees submitted required reports on time, and if agency  officials appropriately documented their review and approval of these  reports. While we identified key monitoring actions and documents, we  did not assess the quality of these actions or documents. To assess the  reliability of the data collected, we compared the information contained in  the oversight documents we reviewed, information provided to us by  agency officials, and information contained in the two data systems. If  there were discrepancies between these sources of information, we  asked HRSA to resolve the discrepancies and provide associated  documentation. We found the data reliable for our purposes.

To  We conducted this performance audit from March 2012 to February 2013  in accordance with generally accepted government auditing standards.  Those standards require that we plan and perform the audit to obtain  sufficient, appropriate evidence to provide a reasonable basis for our  findings 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.
subsections: section_title: Background
paragraphs: Autism—a complex and pervasive developmental disability—usually  becomes evident in early childhood, although signs and symptoms vary.According to CDC, autism begins before age 3 and lasts throughout a  person’s life. Some children show signs of autism within the first few  months of life. In others, symptoms might not appear until 24 months or  later. Still other children with autism seem to develop typically until 18 to  24 months of age and then stop gaining new skills or lose the skills they  once had. Signs and symptoms of autism include a child not responding  to his or her name by 12 months; not pointing at objects to show interest  by 14 months; avoiding eye contact and wanting to be alone; repeating  words or phrases over and over; and flapping hands, rocking, or spinning  in circles. Individuals with autism might have challenges with showing or  talking about their feelings and might also have trouble understanding the  feelings of others.

Diagnosing autism can be difficult; however, early intervention services  can greatly improve a child’s development. There is no medical diagnostic  test available for autism. As a result, doctors consider a child’s behavior  and development to make a clinical diagnosis. By age 2, a diagnosis by  an experienced professional can be considered very reliable. However,  according to CDC most children do not receive a diagnosis until after   age 4. There is no single cause of autism, but a variety of factors are  suspected of causing or contributing to autism, including environmental,  biological, and genetic sources. While there is no known cure, research  shows that early intervention services can greatly improve a child’s  development. Because of the complexity of this disorder, individuals with  autism have diverse needs for medical and mental health care as well as  an array of educational and social services.

The CAA authorizes and directs HHS to conduct specific autism-related  activities, which may include funding external organizations to conduct  these activities through grants, contracts, and cooperative agreements.  The CAA amended sections of the Children’s Health Act of 2000—which  required HHS to conduct activities related to autism research,  surveillance, and coordination—by revising some sections and repealing  other sections of that law as well as establishing new requirements.CAA authorized, but did not appropriate, federal funding to carry out  these activities in fiscal year 2007 through fiscal year 2011.

section_title: HHS Agencies Responded to the CAA by Establishing New Autism Activities and Continuing Others
paragraphs: HHS agencies responded to the CAA with new or continuing autism  activities. In fiscal year 2008, HRSA created the Combating Autism Act  Initiative in response to specific directives included in the CAA. Through  this initiative, HRSA expanded its existing training programs to include an  autism-specific component and established new autism research and  state grants. HRSA conducts all of its Combating Autism Act Initiative  programs under the authority of the CAA. HRSA staff told us that they  have not analyzed whether the agency’s new programs could be  conducted under other HRSA authority.

HRSA expanded two of its preexisting training programs—the Leadership  Education in Neurodevelopmental and Other Related Disabilities (LEND)  and the Developmental-Behavioral Pediatrics (DBP) training programs— through supplemental funding to existing grantees and awards to new  grantees. These two training programs account for the majority of HRSA  spending under its Combating Autism Act Initiative; however, HRSA was  funding these programs prior to enactment of the CAA.Combating Autism Act Initiative, LEND and DBP grantees are required to  include an autism component in their training. Among other things, the  programs train 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; and train specialists to provide comprehensive diagnostic  evaluations to address the shortage of professionals who can confirm or   Under the  rule out an autism diagnosis. According to HRSA, as a result of these  training programs, the number of health professionals enrolled in autism  courses increased from 1,887 in academic year 2008-2009 to 4,256 in  academic year 2010-2011 and the number of diagnostic evaluations  increased from 12,390 in academic year 2008-2009 to 44,102 in  academic year 2010-2011.

Additionally, HRSA created new autism research programs to fund  studies that are intended to advance the current autism knowledge base  and lead to improvements in interventions that address the health and  well-being of children and adolescents with autism and other  developmental disabilities. HRSA also provided grants to establish two  research networks that focus on the physical and behavioral health needs  of children and adolescents with autism. These networks conduct  research on evidence-based practices for interventions, promote the  development of evidence-based guidelines for intervention, validate tools  for autism intervention, and disseminate information to health  professionals and the public, especially families affected by autism.

HRSA also funded new state implementation and planning grants to  implement plans to improve access to comprehensive, coordinated health  care and related services for children and youth with autism and other  developmental disabilities. Twenty-two states received grants from fiscal  years 2008 to 2011 to implement their autism plans. These plans vary  by state, but common elements include a focus on partnerships between  professionals and families of children and youth with autism, access to a  culturally competent family-centered medical home, access to adequate  health insurance and financing of services, early and continuous  screening for autism and other developmental disabilities, community  services organized for easy use by families, and transition services for  youth entering adult health care. Table 1 provides information on the  specific autism-related programs HRSA initiated or expanded—by  increasing funding and the number of grantees—as a result of the CAA.

NIH and CDC continued the autism activities each implemented prior to  the enactment of the CAA, but did not create new programs as a direct  result of the CAA. Some of these activities had been undertaken in  response to the Children’s Health Act of 2000, which, like the CAA,  charges NIH with expanding, intensifying, and coordinating research on  autism. In addition, under both laws, CDC is required to conduct activities  related to establishing regional centers of excellence to collect and  analyze certain information on autism. Since the enactment of the CAA,  NIH continued to fund, expand, and coordinate autism research through  its Autism Centers of Excellence and autism-specific grants and  contracts. According to agency officials, NIH awards these grants and  contracts under its general Public Health Service Act authorities and not  under the specific authorities provided in the CAA.fund its regional centers of excellence for autism epidemiology and other  activities, such as an awareness campaign on autism and other  developmental disabilities. While enactment of the CAA did not result in  any change to CDC’s autism activities, CDC officials stated that the CAA  provided additional focus on these efforts. According to CDC officials, the  CAA’s enactment also strengthened the agency’s Learn the Signs. Act  Early. awareness campaign by elevating the importance of increasing  awareness of developmental milestones to national visibility. See  appendix I for a list of NIH’s and CDC’s autism efforts.

As required by the CAA, the Interagency Autism Coordinating Committee  (IACC)—initially established under the Children’s Health Act— restructured its membership and assumed additional responsibilities to  coordinate autism efforts within HHS. The CAA reauthorized the IACC  and specified that the IACC include both federal and nonfederal  members. IACC membership expanded to include 11 nonfederal  members that represented individuals with autism and parents of children  with autism. In addition, it included members of the autism advocacy,  research, and service-provider communities in accordance with the CAA’s  membership requirements. The CAA also directed the IACC to develop  and annually update a strategic plan and summary of advances in autism  research, and monitor federal autism activities. Since fiscal year 2007,  the IACC issued several reports as a means to coordinate HHS autism  efforts and monitor federal autism activities, some of which were  specifically required by the CAA, such as the development of an autism  strategic plan and a summary of advances in autism research.appendix II for a description of the documents produced by the IACC.

In addition to the changes to the IACC, in 2008, NIH created the Office of  Autism Research Coordination (OARC) within the National Institute of  Mental Health (NIMH) to coordinate and manage the IACC and related  cross-agency activities, programs, and policies. OARC assists the IACC  by conducting analyses and preparing reports for the IACC, assisting with  the IACC’s strategic planning and autism research monitoring, and  providing logistical support for IACC meetings. It also supports  communications through the IACC website and press releases, and  responds to inquiries from the public and other government agencies.OARC officials told us that although HHS could establish an advisory  committee similar to the IACC under other authority, the CAA has  provided the IACC with greater visibility and increased involvement of the  public and federal agencies, through, for example, the annual update of  the IACC’s autism strategic plan.

While the CAA authorized appropriations for HRSA, NIH, and CDC autism activities, the  CAA did not appropriate funds for this purpose. Instead, to fund these activities, HRSA,  NIH, and CDC used funds appropriated to the agencies annually through the budget and  appropriations process for the purpose of carrying out a variety of programs.

Reinvestment Act of 2009. And, according to CDC officials, the agency  redirected a portion of its funding for infant health activities to support pilot  projects implementing the agency’s awareness campaign on autism and  other developmental disabilities. The IACC’s funding increased  significantly from fiscal year 2006 to 2011. From fiscal year 2008 through  fiscal year 2011, as directed by Congress in the annual HHS  appropriations act, the Secretary of Health and Human Services  transferred funds to NIMH for the IACC. From fiscal year 2006 through  fiscal year 2011, the IACC also received funds from the annual NIH  appropriation. See appendix III for information on the funding for these  agencies’ and the IACC’s autism-related activities.

section_title: HRSA Routinely Collects and Reviews Information to Oversee CAA Grantees
paragraphs: HRSA, the only HHS agency that awarded grants specifically as a result  of the CAA, regularly collects and reviews information from grantees to  oversee individual CAA grantees as well as to provide oversight to its  CAA programs. HRSA awarded approximately $164 million in grants to  110 CAA grantees from fiscal years 2008 to 2011. The majority of  funding—about $107 million—was awarded to 47 grantees within HRSA’s  LEND training program, some of which were already receiving funds prior  to the CAA. In addition, nearly $24 million was awarded to two grantees  to support HRSA’s two autism intervention research networks. For all  grantees, the amount of the grant award per year ranged widely from  about $36,000 to $4 million depending on the CAA program, as shown in  appendix IV.

As part of the agency’s oversight of its CAA grantees, HRSA requires  periodic reports from these grantees, which are reviewed by HRSA staff.  HRSA project officers within the Maternal and Child Health Bureau—the  bureau that administers the CAA programs—are responsible for working  with CAA grantees in overseeing the programmatic and technical aspects  of the grant. HRSA grants management specialists and their  supervisors—grants management officers—oversee compliance with  financial reporting requirements and agency grant policies and  regulations. The required reports that are reviewed by HRSA staff include  the following:

Annual federal financial report. The annual federal financial report  is an accounting of expenditures under the project in the budget  period—the period for which HRSA has awarded funds to the  grantee—and cumulatively for the project period.after the end of the budget year.

Annual progress reports. The annual progress report is part of a  grantee’s noncompeting continuing application and describes  grantees’ progress on their grant objectives. Progress reports are due  before the end of the budget period because HRSA staff use these  reports to assess progress and, except for final progress reports, to  determine whether to provide funding for the budget period  subsequent to that covered by the report.

Mid-project progress reports. Mid-project progress reports provide  information on grantees’ progress on research objectives. These  reports are required of certain research grantees and are due midway  through the project period.

Semiannual progress reports. Semiannual progress reports include  information on the grantees’ most significant achievements and  problems encountered during the reporting period as well as the  grantees’ progress on established objectives. These reports are  required of research network grantees and are due midway through  each budget period.

In addition to reports, HRSA also requires grantees to submit written  requests before making certain changes to the grant project, known as  prior-approval requests. For example, a change in the director of the  grant project requires prior approval, as does a request to carry over  unobligated funds to the next budget period or a request for a no-cost  extension—an extension for a limited period beyond the end of the project  period so that the grantee can complete project activities.

When reviewing these reports and grantee prior-approval requests,  HRSA staff are required to fill out checklists in the EHB in which they  indicate their review and approval of the report or request. The content  of the review checklists varies by the type of report or request being  reviewed. For example, among other questions, a progress report  checklist asks if the report reflects the program’s goals. The federal  financial report checklist asks HRSA staff to compare the report with data  in HRSA’s payment management system. All review checklists include a  question where HRSA staff can indicate if they have identified any issues  or concerns with the report or request. In addition, when reviewing  grantee information, HRSA staff may request that a report be revised with  additional or corrected information.

Our review found that HRSA routinely collects and reviews information  submitted by CAA grantees. Generally, grantees submitted required  reports and HRSA staff documented their review of these reports.  Specifically, the 22 grantees in our unbiased random sample submitted  all of the 106 reports they were required to submit and most of these  reports were submitted on time. We found that HRSA staff filled out  checklists approving all of the reports submitted or required report  revisions. In many cases, HRSA staff filled out a checkbox indicating a  “yes,” “no,” or “n/a” response to the questions. However, we noted that  there were some cases where staff provided a narrative description to  support their response to the question, such as a description of how the  grantee is meeting the program’s goals—a question in the progress report  checklist. HRSA officials stated that staff are required to answer the  questions in the checklist, but they are not required to provide a narrative  supporting their answers.

We observed that there were few instances of HRSA staff either  documenting a concern or asking for a report revision before approving  the report. We encountered seven instances where a project officer  approved a report, but documented a concern in a checklist. In all these  instances, the project officer provided narrative describing the concern. For example, in one instance, the project officer wrote that the grantee’s  recruitment of study subjects—parents of children with autism or other  developmental disabilities—was slow. However, the project officer also  stated that the grantee modified its enrollment process, which seemed to  be having some positive effect and that the project officer and grantee  were working together to monitor enrollment. We also identified another  seven instances where HRSA staff asked for a report to be revised either  with additional or corrected information. In almost all instances, the  grantees submitted a revised report and HRSA staff completed a  checklist indicating approval of the revised report.

The question in the checklist is: “Are there any areas of concern: programmatic,  budgetary, or other?” the next budget period. For example, 13 of the 22 grantees in our review  requested to carry over unobligated balances at least once during the  period of our review, and many of them requested it for multiple years— equaling 32 separate requests. The amount of unobligated balances that  grantees requested to carry over in a given year ranged from $1,518 to  $172,514. In all instances, HRSA approved these requests as indicated  by the issuance of a revised notice of award. Almost all requests related  to awards in fiscal year 2010 and later contained an associated checklist  in the EHB filled out by HRSA staff approving the request to carry over  unobligated balances.

In addition to reviewing information submitted by grantees, HRSA  provides additional oversight to grantees. First, it conducts site visits in  person or by means of the web. During a site visit, HRSA staff may collect  information on preliminary research findings, data and analysis, and any  challenges the grantee is facing. Site visits are only required of certain  research grantees, although HRSA may conduct site visits with other  grantees, depending on available resources. HRSA officials target site visits for CAA grantees on the basis of six criteria: (1) the grantee is new,  (2) there has been a change in the grantee’s project director, (3) there  has been a change in the grantee’s scope of work, (4) there are  budgetary issues or the grantee has not made adequate progress on the  project goals, (5) the grantee has requested technical assistance, or   (6) there has been a change in the project officer overseeing the grantee.  HRSA uses a site-visit report to document the visit and has guidance on  what should be included in the report. For example, for training grants,  the report should include a narrative summary of the visit including  highlights, performance measure progress, strengths and challenges, and  any technical assistance needed by the grantee. Second, HRSA officials  stated that HRSA project officers provide routine technical assistance to  certain grantees and others on an as-needed basis. For example, all  research grantees have either a monthly, biweekly, or mid-project  telephone call with HRSA project officers.

Our review confirmed that HRSA has conducted a number of site visits to  monitor CAA grantees. For example, nine of the grantees in our review  had documentation indicating that a site visit had been conducted, with  only two of these being required site visits. While none of the site-visit  reports identified major issues that required corrective action, some did  record challenges the grantees were facing or made suggestions. For  example, one report stated that the grantee may encounter challenges in  the recruitment of trainees. We identified documentation related to  technical assistance that HRSA staff provided to some grantees but not  all. For example, we did not always see documentation of routine  telephone calls with research grantees that HRSA officials say occur on a  regular basis. In response, HRSA officials stated that not all technical  assistance is recorded in the EHB; only when a significant issue arises is  the telephone call, e-mail, or other assistance recorded.

Besides overseeing specific grantees, HRSA monitors its CAA activities  at the program level by regularly collecting performance reports from  grantees. The 22 CAA grantees in our sample submitted all the required  performance reports. According to HRSA officials, the primary purpose of  performance reports is to gauge program performance. For example, data  in performance reports is currently being used by a HRSA contractor to  prepare a report on the progress of the CAA programs for Congress. In  addition, according to HRSA officials, performance data can be used to  modify program performance measures over time. While performance  reports are used to monitor CAA programs—as opposed to grantees— HRSA officials stated that some performance information is also included  in annual progress reports, which are used to oversee specific grantees.  For example, progress reports require grantees to include information on  whether they are having problems meeting their performance measures.  Finally, to further help oversee CAA programs and consolidate  information on its monitoring approach for these programs, in December  2012 HRSA released a grant-management operations manual to outline  its overall approach for monitoring these programs. According to HRSA  officials, this manual will be included in the program folder of the EHB for  each of its CAA programs and will be reviewed annually, consistent with  HHS guidance.

section_title: Agency Comments
paragraphs: We provided a draft of this report to HHS for comment. HHS provided  technical comments that we incorporated, as appropriate.

We are sending a copy of this report to the Secretary of Health and  Human Services. In addition, the report is available at no charge on the  GAO website at http://www.gao.gov.

If you or your staff have any questions about this report, 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 report. GAO staff who made key contributions to this  report are listed in appendix V.

section_title: Appendix I: National Institutes of Health’s (NIH) and Centers for Disease Control and Prevention’s (CDC) Autism Activities
paragraphs: During fiscal year 2006 through fiscal year 2011, NIH and CDC funded a  number of autism activities. Table 2 lists the activities these agencies  funded, including the type and purpose of each activity.

section_title: Appendix II: List of Interagency Autism Coordinating Committee (IACC) Reports
paragraphs: Appendix II: List of Interagency Autism  Coordinating Committee (IACC) Reports Description  According to the IACC, the Strategic Plan provides a blueprint for autism research that is  advisory to the Department of Health and Human Services and serves as a basis for  partnerships with other agencies and private organizations involved in autism research  and services. The 2011 Strategic Plan is organized around seven questions asked by  individuals with autism and their families (such as “When should I be concerned?”). Each  of the seven sections includes a description of what is generally known from autism  research for that particular question and what gaps remain, followed by what was learned  during the previous year. The report also sets up short- and long-term research  objectives based on autism research opportunities. The Combating Autism Act of 2006  (CAA) requires that the Strategic Plan be updated on an annual basis.

The Portfolio Analysis features autism project and funding information for certain federal  agencies and private organizations. According to officials within the National Institutes of  Health Office of Autism Research Coordination (OARC), the agencies and organizations  in these reports have been identified by the IACC and OARC as being involved in autism  research and have agreed to participate. According to the IACC, the intent of these  analysis reports is to better inform the IACC and interested stakeholders about the  funding landscape for a particular year. Additionally, the analysis examines the extent to  which a particular year’s funding and research topics align with the IACC’s most recent  Strategic Plan. The IACC reports that the Portfolio Analysis may also be used by federal  agencies and private research organizations to help guide future funding priorities by  outlining current gaps and opportunities in autism research, as well as serving to highlight  current activities and research progress. OARC officials told us that they plan to issue the  2011 report in 2013.

Summary of Advances in Autism Spectrum  Disorder Research (2007, 2008, 2009,  2010, 2011)

Each year the IACC releases its list of scientific advances in autism research. As reported  by the IACC, the report highlights studies on autism published in the previous year in  peer-reviewed journals and selected by members of the IACC. The number of studies  featured over the years ranges from 20 to 54. The CAA requires that the IACC produce  the Summary of Advances annually.

As reported by the IACC, this report describes several key aspects of worldwide autism  research publications, which may be used to inform planning and strategic funding  decisions for future autism research. Autism-related research articles published between  1980 and 2010 were analyzed to identify historical trends and publication outputs across  the seven questions and research areas of the 2011 IACC Strategic Plan. Information  found in research publications was also used to assess the institutions conducting autism  research, funding organizations supporting the research publications, and the extent of  collaboration between authors from different countries and research institutions.  Additionally, measures, such as citation counts, were used as an assessment of the  impact of the published research. OARC officials told us that there are no plans to update  this report annually.

In 2008 and 2010, OARC, National Institute of Mental Health, prepared this report on behalf of the  IACC. In 2009, OARC, National Institute of Mental Health, and Acclaro Research Solutions, Inc.,  prepared this report on behalf of the IACC.

section_title: Appendix III: Department of Health and Human Services (HHS) Funding for Autism Activities for Fiscal Years 2006 through 2011
paragraphs: HHS component  Health Resources and Services Administration (HRSA)

Centers for Disease Control and Prevention (CDC)

HRSA’s totals include autism grant awards, as well as, for example, funding used for HRSA’s  personnel expenses, travel, supplies, and overhead related to reviewing these grants. NIH’s totals  include funding for research that is conducted outside of NIH’s autism-specific grant announcements.  According to NIH officials, much of the autism research funded by NIH is done under general grant  announcements soliciting biomedical research. IACC’s totals for fiscal years 2008 through 2011  include funding for the Office of Autism Research Coordination within NIMH.

In fiscal year 2008, certain agencies, including HHS agencies, were subject to an across-the-board  rescission. All nondefense discretionary programs were subject to an across-the-board rescission in  fiscal year 2011. According to HRSA officials, HRSA spent less on its autism activities in these years  as a result of the rescissions. NIH officials told us that the agency reduced funding for research grants  as a result of the rescissions, but could not measure the precise effect on autism-related grants.  According to CDC officials, CDC spent less on its autism activities in fiscal year 2011 as a result of  the rescission in that year. In addition, the IACC received less funding in fiscal years 2008 and 2011  as a result of the rescissions.

HRSA’s fiscal year 2006 and 2007 funding represents total funding for its Leadership Education in  Neurodevelopmental and Other Related Disabilities and Developmental-Behavioral Pediatrics training  programs, through which the agency awarded grants that could have had an autism-specific  component; however, an autism-specific component was not a requirement of the grants. Beginning  in fiscal year 2008, these training programs were required to have an autism-specific component.

section_title: Appendix IV: Combating Autism Act Grantees from Fiscal Years 2008 through 2011 by Program
paragraphs: In fiscal year 2008, in response to the Combating Autism Act, the Health  Resources and Services Administration (HRSA) created the Combating  Autism Act Initiative. Under this initiative, HRSA has a number of  programs that fund grants specific to autism. This appendix includes a  description of the purpose of each program. Tables 3 through 11 list the  grants that have been awarded under each program for fiscal years 2008  through 2011.

Program: Leadership Education in Neurodevelopmental and Other  Related Disabilities (LEND) Training Program. The purpose of this  program is to improve the health of children who have, or are at risk for  developing, neurodevelopmental and other related disabilities by training  professionals to assume leadership roles, and to ensure high levels of  interdisciplinary clinical competence in an effort to increase diagnosis of  or rule out individuals’ developmental disabilities, including autism.

Program: Developmental-Behavioral Pediatrics (DBP) Training  Program. The purpose of this program is to train the next generation of  leaders in developmental-behavioral pediatrics; and provide pediatric  practitioners, residents, and medical students with essential  biopsychosocial knowledge and clinical expertise. This program is  focused on developmental disabilities, including autism.

Program: National Combating Autism Interdisciplinary Training  Resource Center. The purpose of this program is to improve the health  of children who have, or are at risk for developing, autism and other  developmental disabilities by providing technical assistance to LEND and  DBP programs to better train professionals to utilize valid and reliable  screening tools for diagnosing or ruling out autism, and provide evidence- based interventions for children.

Program: Autism Intervention Research Program and Autism  Intervention Secondary Data Analysis Studies Program. The purpose  of this program is to support research on evidence-based practices for  interventions to improve the health and well-being of children and  adolescents with autism and other developmental disabilities. The Autism  Intervention Secondary Data Analysis Studies Program utilizes the  analysis of existing secondary data.

Program: Autism Intervention Research Network on Physical Health.  The purpose of this program is to establish and maintain a network  infrastructure designed to be the platform from which to conduct research  on evidence-based practices for interventions to improve the physical  health and well-being of individuals with autism and other developmental  disabilities; develop evidence-based guidelines and validate tools for  interventions; and disseminate critical information on its research findings,  guidelines, and tools.

Program: Autism Intervention Research Network on Behavioral  Health. The purpose of this program is to establish and maintain a  network infrastructure designed to be the platform from which to conduct  research on evidence-based interventions to improve the behavioral,  mental, social, or cognitive health, or a mix of those, and well-being of  children and adolescents with autism and other developmental  disabilities; develop evidence-based guidelines and validate tools for  interventions; and disseminate critical information on its research findings,  guidelines, and tools.

Program: Developmental-Behavioral Pediatrics Research Network.  The purpose of this program is to establish a multicenter scientific and  clinical research network that will promote coordinated research activities  and address health issues. The program is intended to build a  developmental behavioral pediatric research infrastructure that supports  multidisciplinary research, focuses on the translation of research to  practice, and provides the environment in which to train a new generation  of developmental behavioral pediatric researchers.

Program: State Implementation and Planning Grants. The purpose of  this program is to improve access to comprehensive, coordinated health  care and related services by implementing state plans to improve the  system of services.

Program: State Public Health Coordinating Center. The program  purpose is to improve the health of children who have, or are at risk for  developing, autism and other developmental disabilities by coordinating  with the state demonstration grantees; and by developing a strategy for  defining, supporting, and monitoring the role of state public health  agencies in assuring early and timely identification, diagnosis, and  intervention.

section_title: Appendix V: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact

section_title: Staff Acknowledgments
paragraphs: In addition to the contact named above, Geri Redican-Bigott,   Assistant Director; Katherine L. Amoroso; George Bogart; Deirdre Brown;  Sandra George; Cathleen Hamann; Kristin Helfer Koester; Drew Long;  and Sarah Resavy made key contributions to this report.


Question-summary annotations: questions: question: How did the HHS respond to the CAA?
answer: Department of Health and Human Services (HHS) agencies responded to the Combating Autism Act of 2006 (CAA) by establishing some new autism activities and continuing others. The Health Resources and Services Administration (HRSA) created a new initiative to address specific directives in the CAA.
child_questions: question: What were the effects of HRSA's new initiative?
answer: Through this initiative, HRSA expanded its existing training programs by requiring grantees to include training specific to autism. It also established new autism research grants and funded new state grants to improve services for children with autism.
child_questions: question: How does HRSA award its autism grants?
answer: HRSA awards its autism grants under the authority of the CAA.

question: What other agencies were involved with the CAA?
answer: The National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) continued their autism activities--some of which were undertaken in response to the Children's Health Act of 2000--but did not create new programs as a direct result of the CAA. NIH continued to fund, expand, and coordinate autism research through its Autism Centers of Excellence and autism-specific grants and contracts. CDC continued to fund its regional centers of excellence for autism epidemiology and other activities, such as an awareness campaign.

question: How did HHS's Interagency Autism Coordinating Committee help aide in the efforts?
answer: HHS's Interagency Autism Coordinating Committee (IACC)--reauthorized by the CAA--assumed additional responsibilities to coordinate autism efforts within HHS and restructured its membership to include more nonfederal members. NIH created the Office of Autism Research Coordination to coordinate and manage the IACC.

question: How were the efforts of the CAA funded?
answer: The CAA did not appropriate funds to any HHS agency. Nevertheless, overall spending on HRSA, NIH, CDC, and IACC autism activities increased from approximately $143.6 million in fiscal year 2006 to approximately $240.4 million in fiscal year 2011.

questions: question: What does HRSA do?
answer: HRSA, the only HHS agency that has awarded grants specifically as a result of the CAA, regularly collects and reviews information from grantees to oversee individual CAA grantees and programs.
child_questions: question: How has HRSA awarded grants?
answer: HRSA awarded approximately $164 million in grants to 110 CAA grantees from fiscal years 2008 to 2011; though, some of these grantees were already receiving funds prior to the CAA. To oversee these grantees, HRSA requires they regularly submit progress reports and financial reports. The agency also requires grantees to obtain prior approval before making certain changes to their projects.
child_questions: question: What did GAO find by reviewing grantees?
answer: GAO reviewed documentation for an unbiased random sample of 22 grantees, which were representative of the 110 CAA grantees. GAO found that CAA grantees submitted all required reports. Many grantees submitted prior-approval requests for changes to their projects. Most frequently, grantees requested to carry over unobligated funds from the current year to the next budget period. GAO found that HRSA staff routinely collected and reviewed information submitted by the grantees and appropriately documented their review and approval of these submissions.

question: What else has HRSA done to oversee grantees?
answer: HRSA also conducted site visits and provided technical assistance as a means of overseeing grantees. HRSA conducted site visits with 9 of the grantees in our sample during the period of our review, while only 2 of these were required sites visits.

question: How else does HRSA monitor its CAA programs?
answer: Besides overseeing grantees, HRSA monitors its overall CAA programs by regularly collecting performance reports from grantees. In addition, in December 2012, HRSA released a grant-management operations manual to outline its overall approach for monitoring its CAA programs.

questions: question: What is the CDC's stance regarding autism?
answer: CDC considers autism to be an important public health concern.
child_questions: question: What data has CDC collected on autism?
answer: In 2012, CDC reported that an estimated 1 in 88 children in the United States has been identified as having autism—a 23 percent increase from its estimate of 1 in 110 reported in 2009.

question: What is autism?
answer: Autism is a developmental disorder involving communication and social impairment. Symptoms usually become evident in early childhood. There are many suspected causes and no known cure.

questions: question: How do HHS agencies help fund services for individuals diagnosed with autism?
answer: HHS agencies fund educational and support services for individuals diagnosed with autism and fund research in a variety of areas, such as identifying the causes of autism and intervention options.

question: How has the CAA changed the Children's Health Act of 2000?
answer: The CAA amended sections of the Children’s Health Act of 2000 related to autism and established new requirements.
child_questions: question: What else has the CAA done to support people with autism?
answer: The CAA, enacted in December 2006, authorized the expansion of HHS’s activities related to autism research, surveillance, prevention, intervention, and education through fiscal year 2011. The CAA authorized, but did not appropriate, federal funding to carry out these activities.

questions: question: How did GAO attempt to detail the effects and oversight of the CAA?
answer: In this report, GAO (1) describes the actions that HHS agencies have taken as a result of the CAA, and (2) examines the oversight of CAA grantees. To address these objectives, GAO reviewed CAA and HHS documents and interviewed agency officials to identify the autism activities resulting from the CAA.
child_questions: question: How did GAO examine the HHS's spending?
answer: GAO also determined the amount certain HHS agencies spent on autism activities from fiscal year 2006—prior to the CAA—through fiscal year 2011.

question: How did GAO review files for CAA grantees?
answer: In addition, GAO reviewed files for a random sample of CAA grantees to examine oversight from 2008 to 2011.