COMBATING AUTISM 

ACT

HHS Agencies 

Responded with New 

and Continuing 

Activities, Including 

Oversight

Report to Congressional Requesters

February 2013

GAO-13-232

United States Government Accountability Office

GAO
United States Government Accountability Office

Highlights of GAO-13-232, a report to 

congressional requesters

February 2013

COMBATING AUTISM ACT

HHS Agencies Responded with New and Continuing 

Activities, Including Oversight

Why GAO Did This Study

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.

What GAO Found

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 autismspecific 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. 

View GAO-13-232. For more information, 

contact Marcia Crosse at (202) 512-7114 or 

crossem@gao.gov.
Page i GAO-13-232 Combating Autism Act

Letter 1 

Background 4

HHS Agencies Responded to the CAA by Establishing New Autism 

Activities and Continuing Others 6

HRSA Routinely Collects and Reviews Information to Oversee CAA 

Grantees 13

Agency Comments 19

Appendix I National Institutes of Health’s (NIH) and Centers for Disease 

Control and Prevention’s (CDC) Autism Activities 21

Appendix II List of Interagency Autism Coordinating Committee (IACC) 

Reports 25

Appendix III Department of Health and Human Services (HHS) Funding 

for Autism Activities for Fiscal Years 2006 through 2011 26

Appendix IV Combating Autism Act Grantees from Fiscal Years 2008 

through 2011 by Program 27

Appendix V GAO Contact and Staff Acknowledgments 36

Tables

Table 1: Autism Programs and Funding Sponsored by the Health

Resources and Services Administration (HRSA) as a Result 

of the Combating Autism Act, Fiscal Years 2008-2011 8

Table 2: NIH’s and CDC’s Autism Activities during Fiscal Years 

2006 through 2011 21

Table 3: Leadership Education in Neurodevelopmental and Other 

Related Disabilities Training Program Grantees from 

Fiscal Years 2008 through 2011 28

Contents 
Page ii GAO-13-232 Combating Autism Act

Table 4: Developmental-Behavioral Pediatrics Training Program 

Grantees from Fiscal Years 2008 through 2011 30

Table 5: National Combating Autism Interdisciplinary Training 

Resource Center Grantees from Fiscal Years 2008 through 

2011 30

Table 6: Autism Intervention Research Program and Autism 

Intervention Secondary Data Analysis Studies Program 

Grantees from Fiscal Years 2008 through 2011 31

Table 7: Autism Intervention Research Network on Physical Health 

Grantees from Fiscal Years 2008 through 2011 32

Table 8: Autism Intervention Research Network on Behavioral 

Health Grantees from Fiscal Years 2008 through 2011 32

Table 9: Developmental-Behavioral Pediatrics Research Network 

Grantees from Fiscal Years 2008 through 2011 33

Table 10: State Implementation and Planning Grants Grantees from 

Fiscal Years 2008 through 2011 34

Table 11: State Public Health Coordinating Center Grantees from 

Fiscal Years 2008 through 2011 35
Page iii GAO-13-232 Combating Autism Act

Abbreviations

CAA Combating Autism Act of 2006

CDC Centers for Disease Control and Prevention

DBP Developmental-Behavioral Pediatrics

EHB Electronic Handbook

HHS Department of Health and Human Services

HRSA Health Resources and Services Administration

IACC Interagency Autism Coordinating Committee

LEND Leadership Education in Neurodevelopmental and Other

 Related Disabilities

NIH National Institutes of Health

NIMH National Institute of Mental Health

OARC Office of Autism Research Coordination

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Page 1 GAO-13-232 Combating Autism Act

United States Government Accountability Office

Washington, DC 20548

February 27, 2013

Congressional Requesters

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 2009.1 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.2

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.

Diagnoses include autistic disorder, a more severe 

form of autism, and Asperger syndrome, a milder form of autism.

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 

2006.3

 

1

CDC’s most recent estimates are based on data collected in 14 areas of the United 

States. CDC’s estimate of autism prevalence in 2012 is based on data from calendar year 

2008, and the 2009 estimate is based on data from calendar year 2006.

The CAA authorizes the expansion of HHS’s activities related to 

autism research, surveillance, prevention, intervention, and education and 

2

In this report, we use the term “autism” to refer to autism spectrum disorders.

3

Pub. L. No. 109-416, 120 Stat. 2821 (Dec. 19, 2006).

 
 

Page 2 GAO-13-232 Combating Autism Act

authorizes funding for such activities through fiscal year 2011.4 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.5

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.6

To examine the oversight of CAA grantees, we interviewed HHS officials 

at HRSA, NIH, and CDC to determine whether they had awarded CAA 

grants; reviewed agencies’ grants oversight policies and procedures; and 

conducted a review of selected grantees’ files. Specifically, we reviewed 

agency guidance documents that outline protocols and procedures for 

overseeing grantees.

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.

7

 

4

These activities were reauthorized and additional funding was authorized through fiscal 

year 2014 under the Combating Autism Reauthorization Act of 2011. Pub. L. No. 111-32, 

125 Stat. 361 (Sept. 30, 2011).

We also reviewed documents—such as funding 

opportunity announcements for CAA grants—that outline CAA grantees’ 

specific reporting requirements and other responsibilities. In addition, we 

5

A subsequent report will examine the involvement of federal agencies in autism activities 

and the coordination of these activities. 

6

HRSA was included in the review because the CAA requires the Secretary of Health and 

Human Services to establish various autism activities, and HRSA carries out these 

activities.

7

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). 
 

Page 3 GAO-13-232 Combating Autism Act

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.8 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.9

 

8

Our sample is too small to generalize the results to the 110 CAA grantees as a whole; 

however, our sample is representative of the population of CAA grantees. 

To 

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.

9

Agency staff use the EHB to award grants, review information related to CAA grants, and 

monitor CAA grantees’ performance. Grantees upload information pertaining to their 

grant—such as required reports—and agency staff can indicate their review and approval 

of this information, in the EHB. While the submission of performance reports—a report 

grantees submit annually with performance and budget information—is documented in the 

EHB, it is not possible to view these reports in the EHB. These reports can be viewed in 

the Discretionary Grant Information System—a system that regularly collects program and 

performance measure data, including performance reports, submitted by grantees. We 

reviewed files relating to grants awarded in fiscal years 2008 through 2011 that were 

included in these two data systems as of early October 2012.
 

Page 4 GAO-13-232 Combating Autism Act

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.

Autism—a complex and pervasive developmental disability—usually 

becomes evident in early childhood, although signs and symptoms vary.10

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 

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.

 

10A developmental disability is a chronic condition caused by mental impairment, physical 

impairment, or both that begins any time during prenatal development up to age 22 and 

usually persists throughout a person’s life. Individuals with developmental disabilities have 

substantial functional limitations in at least three major life activities such as language, 

mobility, learning, self-help, and independent living. Developmental disabilities may

include cerebral palsy, hearing loss, intellectual disability, and vision impairment.

Background 
 

Page 5 GAO-13-232 Combating Autism Act

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.11

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.12 The 

CAA authorized, but did not appropriate, federal funding to carry out 

these activities in fiscal year 2007 through fiscal year 2011.

 

11A cooperative agreement is an alternative assistance instrument used instead of a grant 

whenever substantial federal involvement with the recipient during performance is 

anticipated.

12Pub. L. No. 106-310, 114 Stat. 1101 (Oct. 17, 2000). We previously reported on federal 

autism activities under the Children’s Health Act. See GAO, Federal Autism Activities: 

Funding for Research Has Increased, but Agencies Need to Resolve Surveillance 

Challenges, GAO-06-700 (Washington, D.C.: July 19, 2006).
 

Page 6 GAO-13-232 Combating Autism Act

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.13

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.

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.

14

 

13The CAA directs the Secretary of Health and Human Services to undertake autism 

education, early detection, and intervention activities, subject to the availability of federal 

funding; and HRSA and CDC carry out these activities. The CAA directives are: provide 

information and education on autism and other developmental disabilities to increase 

public awareness of developmental milestones; promote research into the development 

and validation of reliable screening tools for autism and other developmental disabilities, 

and disseminate information regarding those screening tools; promote early screening of 

individuals at higher risk for autism and other developmental disabilities as early as 

practicable, given evidence-based screening techniques and interventions; increase the 

number of individuals who are able to confirm or rule out a diagnosis of autism and other 

developmental disabilities; increase the number of individuals able to provide evidencebased interventions for individuals diagnosed with autism or other developmental 

disabilities; and, promote the use of evidence-based interventions for individuals at higher 

risk for autism and other developmental disabilities as early as practicable.

Under the 

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 

14HRSA spent approximately $19.9 million on the LEND and DBP training programs in 

fiscal year 2007. In fiscal year 2008, when the Combating Autism Act Initiative was 

implemented, HRSA spent approximately $25.8 million on the LEND and DBP training 

programs.

HHS Agencies 

Responded to the 

CAA by Establishing 

New Autism Activities 

and Continuing 

Others
 

Page 7 GAO-13-232 Combating Autism Act

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.15

 

15The states that received state implementation and planning grants are Alaska, Colorado, 

Connecticut, Delaware, Georgia, Hawaii, Illinois, Maine, Maryland, Mississippi, Missouri, 

New Jersey, New Mexico, New York, North Dakota, Ohio, Rhode Island, Tennessee, 

Utah, Vermont, Washington, and Wisconsin.

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.
 

Page 8 GAO-13-232 Combating Autism Act

Table 1: Autism Programs and Funding Sponsored by the Health Resources and Services Administration (HRSA) as a Result 

of the Combating Autism Act, Fiscal Years 2008-2011

Programs

Type of 

program Purpose of program

Number of 

grantees, fiscal 

years 2008-2011

Total funding, fiscal 

years 2008-2011 

(dollars in millions)

Leadership Education in 

Neurodevelopmental and 

Other Related Disabilities 

(LEND) Training Program

Training 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 with developmental disabilities, 

including autism.

47 $107.2 a

Developmental-Behavioral 

Pediatrics (DBP) Training 

Program 

a

Training 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.

10 7.3

National Combating 

Autism Interdisciplinary 

Training Resource Center

Training 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.

1 2.5

Autism Intervention 

Research Program and 

Autism Intervention 

Secondary Data Analysis 

Studies Program

Research 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. 

26b 10.0b

Autism Intervention 

Research Network on 

Physical Health

Research Establish and maintain a network 

infrastructure designed to be the platform 

from which to conduct research on evidencebased practices for interventions to improve 

the physical health and well-being of 

individuals with autism and other 

developmental disabilities; develop evidencebased guidelines and validate tools for 

interventions; and disseminate critical 

information on its research findings, 

guidelines, and tools.

1 15.6
 

Page 9 GAO-13-232 Combating Autism Act

Programs

Type of 

program Purpose of program

Number of 

grantees, fiscal 

years 2008-2011

Total funding, fiscal 

years 2008-2011 

(dollars in millions)

Autism Intervention 

Research Network on 

Behavioral Health

Research Establish and maintain a network 

infrastructure designed to be the platform 

from which to conduct research on evidencebased 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 evidencebased guidelines and validate tools for 

interventions; and disseminate critical 

information on its research findings, 

guidelines, and tools.

1 7.9

Developmental-Behavioral 

Pediatric Research 

Network

Research Establish a multicenter scientific and clinical 

research network that will promote 

coordinated research activities and address 

health issues. 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.

1 0.4

State Implementation and 

Planning Grantsc Other Improve access to comprehensive, coordinated health care and related services 

by implementing state plans to improve the 

system of services.

22 11.8d

State Public Health 

Coordinating Center

Other Improve the health of children who have, or 

are at risk for developing, autism and other 

developmental disabilities by coordinating 

with the state implementation and planning 

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.

1 1.1

Total 110 $163.8e

Source: GAO analysis of HRSA documents and interviews with HRSA officials.

Notes: HRSA’s funds shown in this table were not appropriated by the Combating Autism Act (CAA). 

To fund these programs, HRSA used funds appropriated to the agency annually through the budget 

and appropriations process for the purpose of carrying out a variety of programs. Although the LEND 

and DBP training programs were established prior to the act, HRSA expanded these programs as a 

result of the act.

a

b

These totals include one funding supplement to an existing cooperative agreement to examine 

current knowledge, research gaps, and methodological challenges about the life-course trajectory of 

individuals with autism, and develop a life-course-focused autism research agenda.

These totals include one funding supplement to an existing cooperative agreement to provide 

technical assistance to LEND grantees. A cooperative agreement is an alternative assistance 

instrument used instead of a grant whenever substantial federal involvement with the recipient during 

performance is anticipated.
 

Page 10 GAO-13-232 Combating Autism Act

c

This program comprises: State Implementation Grants for Improving Services for Children and Youth 

with Autism Spectrum Disorder and other Developmental Disabilities, and State Planning Grants for 

Improving Services for Children and Youth with Autism Spectrum Disorder and other Developmental 

Disabilities.

d

This total includes supplemental funding provided to four state implementation and planning 

grantees to expand implementation of the Centers for Disease Control and Prevention’s (CDC) Learn 

the Signs. Act Early. campaign, through an interagency agreement between HRSA and CDC.

e

Individual funding entries do not sum to total due to rounding.

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.16 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.17

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 

CDC continued to 

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.

 

16In contrast to the requirement contained in the Children’s Health Act, however, the CAA 

directs NIH and CDC to undertake these activities subject to the availability of 

appropriations.

17See, for example, Public Health Service Act, § 301 (codified at 42 U.S.C. § 241) 

(providing NIH broad authority to award grants to public and private institutions to conduct 

scientific research).
 

Page 11 GAO-13-232 Combating Autism Act

and specified that the IACC include both federal and nonfederal 

members.18 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.19 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.20

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 

See 

appendix II for a description of the documents produced by the IACC.

 

18The CAA specified that the IACC include certain federal members, such as officials from 

CDC, NIH, and the Department of Education. It also required the Secretary to appoint a 

minimum number of nonfederal members, which must include at least one person with 

autism; at least one parent or legal guardian of a person with autism; and at least one 

representative of a leading research, advocacy, or service organization for individuals with 

autism. The Children’s Health Act did not require that nonfederal entities or officials from 

the Department of Education be included as IACC members. However, the Children’s 

Health Act authorized the Secretary of Health and Human Services to appoint parents or 

legal guardians of individuals with autism to the committee. Prior to the enactment of the 

CAA, the committee included four nonfederal members.

19The CAA also requires the IACC to make recommendations to the Secretary of Health 

and Human Services on any changes to federal activities, including recommendations 

made in the strategic plan on autism research.

20Prior to the CAA, the IACC produced a research matrix that NIH officials viewed as a 

comprehensive list of autism research goals. It also issued an autism roadmap that 

provided a synthesis of issues and challenges related to services for individuals with 

autism and a set of performance measures and recommendations for improving services.
 

Page 12 GAO-13-232 Combating Autism Act

responds to inquiries from the public and other government agencies.21

Following the enactment of the CAA, HHS agencies continued to fund 

existing activities and funded new activities.

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.

22 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 spent more money on its autism 

programs beginning in fiscal year 2008 as a result of implementing its 

Combating Autism Act Initiative. From fiscal year 2008 through fiscal year 

2010 HRSA increased this spending by an average of $5.75 million 

annually. HRSA’s spending on autism programs totaled approximately 

$47.9 million in fiscal year 2010. In fiscal year 2011, HRSA spent slightly 

less on these programs.

23

 

21In addition, on behalf of the Secretary of Health and Human Services, OARC produced 

a report to Congress on autism activities as required by the CAA. See HHS, OARC, NIH, 

Report to Congress on Activities Related to Autism Spectrum Disorder and Other 

Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – 

FY 2009) (Rockville, Md.: December 2010, revised April 2011).

Although the CAA did not provide 

appropriations for NIH’s and CDC’s autism activities, nor did Congress 

provide the agencies a specific autism appropriation after the CAA’s 

enactment, NIH and CDC increased their overall spending on autism from 

fiscal year 2006 to fiscal year 2011. NIH spent more money on its autism 

activities in fiscal years 2009 and 2010 as a result of an appropriation for 

scientific research that it received under the American Recovery and 

22While 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.

23In 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.
 

Page 13 GAO-13-232 Combating Autism Act

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.

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.24

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:

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.

 

24HRSA issued these grants as part of its Combating Autism Act Initiative. For the 

purpose of this report we are referring to the programs and grantees in HRSA’s 

Combating Autism Act Initiative as CAA grantees or CAA programs. 

HRSA Routinely 

Collects and Reviews 

Information to 

Oversee CAA 

Grantees 
 

Page 14 GAO-13-232 Combating Autism Act

• 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.25 The report is due 

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.26

• 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.27

• 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.28

 

25The annual federal financial reports were formerly called financial status reports. A 

budget period is the interval of time (usually 12 months each) into which a project period is 

divided for budgetary and funding purposes. The project period refers to the total period 

for which support of a project has been programmatically approved.

26Grantees who submit a competing continuation application include a progress report 

summarizing progress made over the entire previous project period along with their 

application. Grantees who do not reapply for a grant, and complete the period of project 

support from HRSA, must submit a comprehensive final report. This report covers the last 

year of the project period and includes information on progress over all years of the 

project period. 

27HRSA started requiring mid-project reports of grantees in its Autism Intervention 

Research and Autism Intervention Secondary Data Analysis Studies Programs in fiscal 

year 2010. Because Autism Intervention Secondary Data Analysis Studies Program grants 

are 1-year grants, the reports are referred to as mid-year progress reports.

28The research networks are the Autism Intervention Research Network on Physical 

Health, Autism Intervention Research Network on Behavioral Health, and DevelopmentalBehavioral Pediatric Research Network.
 

Page 15 GAO-13-232 Combating Autism Act

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.29 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.30

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

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.

31

 

29Progress reports that are submitted as part of competing continuation applications are 

reviewed with the application. HRSA staff use a checklist when reviewing the application.

submitted 

30HRSA grantees request funds that they have available at any time during the budget 

period through the use of an online form that is submitted to the HRSA Payment 

Management System. The Payment Management System keeps track of how often and 

what amount of funds are withdrawn by the grantee during the course of the budget 

period.

31Our unbiased random sample of 22 grantees consisted of 11 training grantees, 

7 research grantees, and 4 state implementation and planning grantees. This sample is 

representative of the 110 CAA grantees. The grantees in our sample received about 

$28 million—about 17 percent—of the total awards CAA grantees received from fiscal 

years 2008 through 2011. HRSA officials stated that no CAA grantees were high-risk 

grantees, and we found this to be accurate for the grantees we reviewed. “High risk” is 

used to describe a grantee that is at risk of financial failure or failure to perform based on 

a history of poor performance or poor business practices, financial instability, or

inadequate management systems.
 

Page 16 GAO-13-232 Combating Autism Act

all of the 106 reports they were required to submit and most of these 

reports were submitted on time.32

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.

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.

33

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.34

We also found that grantees submit a number of prior-approval requests, 

which HRSA staff review and generally approve. Most frequently, 

grantees request to carry over unobligated funds from the current year to 

 

32This includes 46 federal financial reports, 54 progress reports, 4 mid-project progress 

reports, and 2 comprehensive final reports. This count includes one annual federal 

financial report per grantee per year. Grantees are allowed to revise and resubmit their 

federal financial report if they find that information needs to be corrected.

33The question in the checklist is: “Are there any areas of concern: programmatic, 

budgetary, or other?” 

34In one instance, the grantee had not yet submitted the revised report at the time of our 

review.
 

Page 17 GAO-13-232 Combating Autism Act

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.35 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.36

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.37

 

35The notice of award is the official document that states the terms, conditions, and 

amount of a grant award and is signed by the official who is authorized to obligate funds 

on behalf of HRSA. A notice of award shows the amount of federal funds available to the 

grantee and is issued at the start of each budget period. A revised notice of award may be 

issued during a budget period to effect an action resulting in a change in the amount of 

support or other change in the terms and conditions of award, such as a carryover of 

funds.

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 

36According to HRSA officials, HRSA staff began using a checklist to indicate their review 

and approval of prior-approval requests at the end of calendar year 2009. Prior to this, the 

issuance of a new notice of award indicated HRSA review and approval of such requests. 

We reviewed one carryover request related to an award in fiscal year 2010 that did not 

have a review checklist in the EHB; however, a new notice of award indicated that the 

carryover request had been approved.

37Grantees in HRSA’s Autism Intervention Research and Autism Intervention Secondary 

Data Analysis Studies Programs are required to have a web-based site visit at project 

end.
 

Page 18 GAO-13-232 Combating Autism Act

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.38 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.39

 

38Performance reports include financial forms, project abstracts and other grant summary 

data, and performance measures. Grantees submit initial performance reports at the 

beginning of the project period, annual performance reports after the end of each budget 

year, and project period end performance reports after the end of the project period.

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—

39HRSA expects to submit this report to Congress in the middle of calendar year 2013.
 

Page 19 GAO-13-232 Combating Autism Act

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.40 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.41

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.

Marcia Crosse

Director, Health Care

 

40HRSA, Maternal and Child Health Bureau, Operations Manual, Combating Autism Act 

Initiative (Rockville, Md.: December 2012).

41HHS guidance indicates that a program-wide approach to monitoring grantees must be 

established and reviewed at least annually to determine if the approach needs to be 

modified. This annual review should be documented, as appropriate, in the program 

information file. HHS, Awarding Agency Grants Administration Manual. 

Agency Comments
Page 20 GAO-13-232 Combating Autism Act

List of Requesters

The Honorable Tom Coburn, M.D.

Ranking Member

Committee on Homeland Security and Governmental Affairs

United States Senate

The Honorable Ron Johnson

United States Senate

The Honorable Mike Lee

United States Senate

The Honorable Robert Menendez

United States Senate
Appendix I: National Institutes of Health’s (NIH) 

and Centers for Disease Control and 

Prevention’s (CDC) Autism Activities

Page 21 GAO-13-232 Combating Autism Act

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. 

Table 2: NIH’s and CDC’s Autism Activities during Fiscal Years 2006 through 2011

Agency Activity Type of activity Purpose of activity

NIH Autism Centers of 

Excellence Program

Research a NIH initiative that supports large-scale multidisciplinary 

studies on autism, with the goal of determining the 

disorders’ causes and the best treatments for them.

Collaborative Programs of 

Excellence in Autism

Research a Conduct research to learn about the possible causes of 

autism, including genetic, immunological, and 

environmental factors; as well as diagnosis, early 

detection, behavioral and communications 

characteristics, and treatment of autism.

Studies to Advance Autism 

Research and Treatment 

Network

Research

a

Support and conduct both individual and collaborative 

projects to learn more about the causes, diagnosis, early 

detection, prevention, and treatments of autism.

Children’s Environmental 

Health and Disease 

Prevention Research 

Centers (with Environmental 

Protection Agency)b

Research Examine the effect of environmental exposures on 

children’s health.

Research Units on Pediatric 

Psychopharmacology Autism 

Network

Research Clinical trials evaluating psychopharmacological 

treatments for co-occurring behavior disorders in autism.

Research to Address the 

Heterogeneity in Autism 

Spectrum Disorders

Research Address gaps identified in the Interagency Autism 

Coordinating Committee’s Strategic Plan and other 

knowledge gap areas related to autism, and to ensure 

appropriate attention is given to the most critical shortterm objectives within the Strategic Plan. Applications for 

research projects were solicited within the following topic 

areas [relevant to research on the heterogeneity of 

autism]: measurement development, 

biomarkers/biological signatures, immune and central 

nervous systems interactions, genetics/genomics, 

environmental risk factors, model development, 

treatment and intervention, and services research.

Challenge Grants in Health 

and Science Researchb Research Support research on topic areas that address specific scientific and health research challenges in biomedical 

and behavioral research that would benefit from 

significant 2-year startup funds.

Appendix I: National Institutes of Health’s 

(NIH) and Centers for Disease Control and 

Prevention’s (CDC) Autism Activities 
Appendix I: National Institutes of Health’s (NIH) 

and Centers for Disease Control and 

Prevention’s (CDC) Autism Activities

Page 22 GAO-13-232 Combating Autism Act

Agency Activity Type of activity Purpose of activity

Grand Opportunities grantsb Research Support high-impact ideas that lend themselves to shortterm funding, and may lay the foundation for new fields 

of investigation. The grants program will support largescale research projects that accelerate critical 

breakthroughs, early and applied research on cuttingedge technologies, and new approaches to improve the 

synergy and interactions among multi- and 

interdisciplinary research teams. The initiative seeks 

novel approaches in areas that address specific 

knowledge gaps, scientific opportunities, new 

technologies, data generation, or research methods that 

would benefit from an influx of funds to quickly advance 

the area in significant ways.

Initiative related to nonverbal 

school-age children

Research Opportunity for investigators and U.S. 

institutions/organizations with certain active grants to 

submit revision applications to support an expansion of 

the scope or research protocol to develop preliminary 

investigations into the characterization and/or treatment 

of nonverbal school-aged children with autism.

Contract related to Health 

Outcomes for Children with 

Autism and their Families

Research Describe the health and health care trajectories of 

individuals with autism and their families, and evaluate 

the feasibility of using a large population-based database 

for research on risk factors for autism.

National Institute of Mental 

Health Intramural Research 

Program, Autism Research

Research Accelerate development and testing of innovative 

treatments. NIH has undertaken activities to address the 

effectiveness and outcomes of innovative and newly 

developed intervention strategies for individuals 

diagnosed with autism or other developmental 

disabilities.

Eunice Kennedy Shriver 

National Institute of Child 

Health and Human 

Development Brain and 

Tissue Bank for 

Developmental Disordersb

Research Advance the research of developmental disorders. The 

objective of this human-tissue repository is to 

systematically collect, store, and distribute brain and 

other tissues for research dedicated to the improved 

understanding, care, and treatment of individuals with 

developmental disorders.

NIH National Database for 

Autism Research

Research Accelerate autism research by creating an infrastructure 

that integrates heterogeneous datasets allowing access 

to much more quality research data than investigators 

would be able to collect on their own.

National Institute of Mental 

Health Center for 

Collaborative Genetic 

Studies of Mental Disordersb

Research Accelerate progress toward understanding genetic 

origins of mental disorders including autism, 

schizophrenia, bipolar disorder, and depression. 

Encourage the sharing of biological as well as clinical 

and genetic data from individuals or families with these 

disorders, and perform and disseminate analyses of 

these data.
Appendix I: National Institutes of Health’s (NIH) 

and Centers for Disease Control and 

Prevention’s (CDC) Autism Activities

Page 23 GAO-13-232 Combating Autism Act

Agency Activity Type of activity Purpose of activity

Psychosocial/Behavioral 

Interventions and Services 

Research in Autism 

Spectrum Disorders

Research Facilitate exploratory research on 

psychosocial/behavioral treatments and innovative 

services research for autism, including the development 

of instruments to evaluate the impact of interventions on 

core features of autism, and comorbid symptomatology.

Research on Autism and 

Autism Spectrum Disorders

Research Supports research designed to elucidate the etiology, 

epidemiology, diagnosis, treatment, and optimal means 

of service delivery in relation to autism.

Shared Neurobiology of 

Fragile X Syndrome and

Autism

Research Aimed at characterizing, understanding, and treating 

etiological and pathophysiological mechanisms common 

to both Fragile X syndrome and autism.

Minnesota Somali Project 

(with CDC)c Surveillance Investigate reports of elevated prevalence of autism 

among children born to Somali immigrants living in 

Minneapolis, Minn.

CDC Metropolitan Atlanta 

Developmental Disabilities 

Surveillance Program 

Surveillance Provide regular and systematic monitoring of prevalence 

rates of selected developmental disabilities according to 

various demographic characteristics of children and their 

mothers and provide a framework for initiating special 

studies of children who have the selected developmental 

disabilities by establishing a population-based case 

series of such children.

Autism and Developmental 

Disabilities Monitoring 

Network

Surveillance Collaborative project to characterize the population 

prevalence and characteristics of children with autism 

and other developmental disabilities. Goals are to: 

provide data about how common autism is in a specific 

place and time period; describe the population of 

children with autism; compare how common autism is in 

different areas of the country; identify changes in autism 

occurrence over time; and understand the impact of 

autism and related conditions in U.S. communities.

Autism Spectrum Disorder 

Surveillance of Younger 

Children (Pilot Alternative 

Surveillance)

Surveillance Investigate the feasibility of combining developmental 

screening and monitoring prevalence of autism for 

children under the age of 4.

Centers for Autism and 

Developmental Disabilities 

Research and Epidemiology 

Network

Research Regional centers of excellence for autism and other 

developmental disabilities. The primary activity of the

network is to conduct the Study to Explore Early 

Development—a collaborative, multisite epidemiologic 

study of risk factors for autism.

Centers for Autism and 

Developmental Disabilities 

Research and Epidemiology 

Data Coordinating Center

Research Provide a centralized, web-based, automated-workflow 

system that supports all of the study activities for the 

Study to Explore Early Development, cited above.

Georgia Study to Explore 

Early Development

Research The Study to Explore Early Development is a multiyear, 

multisite study in six diverse areas that looks at possible 

causes of and risks for autism and other developmental 

delays.
Appendix I: National Institutes of Health’s (NIH) 

and Centers for Disease Control and 

Prevention’s (CDC) Autism Activities

Page 24 GAO-13-232 Combating Autism Act

Agency Activity Type of activity Purpose of activity

CDC-Denmark Program Research Examine a variety of public health issues, including 

autism and other developmental disabilities. All studies 

in this program have a basic activity of either improving 

existing registries, conducting registry-based studies, or 

both.

Minnesota Somali Project 

(with NIH)c Surveillance Investigate reports of elevated prevalence of autism among children born to Somali immigrants living in 

Minneapolis, Minn.

Blood Spot Project (award 

managed by the Department 

of Defense)

Research Investigate the relationship between development of 

autism and cross-reactive antibodies that may cause 

alterations in fetal brain development. Archived dried 

blood spots from newborn children who later developed 

autism and from others who developed normally will be 

analyzed for specific antibodies. This project is funded 

by the Department of Defense.

Learn the Signs. Act Early.b Awareness campaign/ 

information 

dissemination

The program is made up of three components: (1) health 

education 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; (2) Act 

Early Initiative works with state, territorial, and national 

partners to improve early childhood systems by 

enhancing collaborative efforts to improve screening and 

referral to early intervention services and supporting the 

work of Act Early Ambassadors to promote Learn the 

Signs. Act Early. messages and tools and improve early 

identification efforts in their state; and (3) research and 

evaluation improves campaign materials and 

implementation activities, and increases our 

understanding of the factors that influence early 

identification and referral.

Source: GAO analysis of NIH and CDC documents and interviews.

Notes: NIH and CDC funded these autism activities at some point between fiscal years 2006 through 

2011, but did not necessarily fund each activity in every fiscal year. In addition to the autism research 

funded through these activities, NIH funded autism research through other mechanisms, such as 

through general grant announcements not specific to autism.

a

b

While these activities are not autism-specific, they include an autism component, such as autismspecific research grants.

In fiscal year 2007 and 2008, respectively, the Collaborative Programs of Excellence in Autism and 

the Studies to Advance Autism Research and Treatment Network expired. NIH consolidated the 

funding and goals of these programs into the Autism Centers of Excellence Program.

c

This activity was also partially funded by a private organization.
Appendix II: List of Interagency Autism 

Coordinating Committee (IACC) Reports

Page 25 GAO-13-232 Combating Autism Act

Report Description

Strategic Plan for Autism Spectrum 

Disorder Research (2009, 2010, 2011)

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.

Autism Spectrum Disorder Research 

Portfolio Analysis Report (2008, 2009, 

2010)

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.

a

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.

Autism Spectrum Disorder Research 

Publications Analysis: The Global 

Landscape of Autism Researchb

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.

Source: GAO review of IACC and OARC documents.

a

b

OARC, National Institute of Mental Health, and Thomson Reuters, Inc., prepared this report on 

behalf of the IACC.

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.

Appendix II: List of Interagency Autism 

Coordinating Committee (IACC) Reports
Appendix III: Department of Health and Human 

Services (HHS) Funding for Autism Activities 

for Fiscal Years 2006 through 2011

Page 26 GAO-13-232 Combating Autism Act

Dollars in millions

Fiscal year

HHS component 2006 2007 2008 2009 2010 2011

Health Resources and Services Administration (HRSA) $20.0 $19.9 a $36.4 a $42.0 $47.9 $47.7

National Institutes of Health (NIH) 108.3 126.8 118.1 196.4b 217.1b 168.7

Centers for Disease Control and Prevention (CDC) 15.1 14.8 16.2 20.4 22.1 21.4

Interagency Autism Coordinating Committee (IACC) 0.2 0.1 1.2 2.6 2.6 2.6

Totalc $143.6 $161.6 $171.8 $261.4 $289.7 $240.4

Source: GAO analysis of HRSA, NIH, CDC, and IACC documents and interviews.

Notes: While the Combating Autism Act (CAA) authorized appropriations for HRSA, NIH, CDC, and 

IACC 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. As directed by 

Congress in the annual HHS appropriations acts for fiscal years 2008 through 2011, the Secretary of 

Health and Human Services transferred funds to NIH’s National Institute of Mental Health (NIMH) for 

the IACC. The IACC also received funds from the annual NIH appropriation for fiscal years 2006 

through 2011.

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.

a

b

NIH’s fiscal year 2009 and 2010 funding totals include additional funds appropriated to NIH under the 

American Recovery and Reinvestment Act of 2009. NIH spent $64 million of these funds in fiscal year 

2009 and $57.5 million in fiscal year 2010 on autism activities.

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.

c

Individual funding entries may not sum to total due to rounding.

Appendix III: Department of Health and 

Human Services (HHS) Funding for Autism 

Activities for Fiscal Years 2006 through 2011
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 27 GAO-13-232 Combating Autism Act

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 2011.1

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.

 

1

The fiscal years in tables 3 through 11 are based on the start date of the budget period 

for which the grant was awarded. The budget period for some of these grantees is from 

July 1 through June 31, and the budget period for other grantees is from September 1 

through August 31. Under its Combating Autism Act Initiative, HRSA also provided 

supplemental funding to two existing cooperative agreements. A cooperative agreement is 

an alternative assistance instrument used instead of a grant whenever substantial federal 

involvement with the recipient during performance is anticipated. The first supplement is to 

provide technical assistance to grantees under one of HRSA’s Combating Autism Act 

Initiative Programs—Leadership Education in Neurodevelopmental and Other Related 

Disabilities. The grantee is Georgetown University in Washington, D.C., and the grantee 

received $22,000 and $43,550 in fiscal years 2010 and 2011, respectively. The second 

supplement is to examine current knowledge, research gaps, and methodological 

challenges about the life-course trajectory of individuals with autism, and develop a lifecourse-focused autism research agenda. The grantee is the Regents of the University of 

California at Los Angeles and the grantee received $30,785 in fiscal year 2011. 

Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 28 GAO-13-232 Combating Autism Act

Table 3: Leadership Education in Neurodevelopmental and Other Related Disabilities Training Program Grantees from Fiscal 

Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

T73MC00003 University of Alabama at Birmingham $755,326 $755,326 $755,326 $680,758

T73MC00008 Children’s Hospital of Los Angeles, School of Physical 

Therapy

818,784 818,784 818,785 650,973

T73MC00013 University of Miami 629,576 729,576 814,576 787,500

T73MC00014

a

University of Hawaii at Manoa 495,166 595,166 670,166 595,000

T73MC00015 Indiana University, School of Medicine 681,440 681,440 681,440 632,046

T73MC00016 University of Iowa 491,265 591,265 666,265 586,537

T73MC00019 The Johns Hopkins University 884,277 35,840 0 0 

T73MC17245 Kennedy Krieger Children’s Hospital, Inc. 0 948,416 1,059,256 850,000

T73MC00020 Children’s Hospital (Boston, MA) 755,326 755,326 755,326 745,000

T73MC00022

a

Curators of University of Missouri at Columbia 393,012 493,012 568,012 574,811

T73MC00023 Board of Regents of the University of Nebraska 612,663 612,663 612,663 622,943

T73MC00024 Trustees of Dartmouth College 651,964 651,964 651,964 848,868

T73MC00025 University of New Mexico Health Sciences Center 527,560 627,560 702,560 680,000

T73MC00027 Albert Einstein College of Medicine 691,265 691,265 691,265 679,299

T73MC00029 University of Rochester 691,265 691,265 691,265 684,028

T73MC00030 University of North Carolina at Chapel Hill 768,691 768,691 798,691 910,004

T73MC00032

a

University of Cincinnati 766,373 866,373 941,373 800,167

T73MC00033 University of Oklahoma HSC 442,139 542,139 617,139 595,000

T73MC00034 Oregon Health & Sciences University 685,979 785,979 860,979 742,050

T73MC00036 University of Pittsburgh 393,012 493,012 568,012 659,779

T73MC00037

a

University of South Dakota 432,313 532,313 607,313 602,466

T73MC00038

a

University of Tennessee at Knoxville 953,109 953,109 953,459 807,500

T73MC00039

a

University of Vermont 651,964 587,125 651,964 550,000

T73MC00040 Virginia Commonwealth University 451,964 504,798 626,964 584,773

T73MC00041 University of Washington 940,435 940,435 940,435 891,030

T73MC00043

a

West Virginia University Research Corporation 639,822 639,822 639,822 567,935

T73MC00044 University of Wisconsin at Madison 569,576 669,576 744,576 738,483

T73MC00049

a

Ohio State University Research Foundation 393,011 493,011 568,011 821,027

T73MC00050 Vanderbilt University Medical Center 593,012 593,012 623,012 651,500

T73MC00051 The Children’s Hospital of Philadelphia 790,966 784,966 790,966 764,391

T73MC00054 University of Utah 755,241 755,241 785,241 823,048

T73MC00056

a

University of Massachusetts Medical School 604,256 704,256 779,256 685,732
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 29 GAO-13-232 Combating Autism Act

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

T73MC03181 Children’s Research Institute (Washington, DC) 593,012 593,012 593,012 0 

T73MC04320 New York Medical College 620,597 720,597 795,597 693,003

T73MC06623 University of Kansas Medical Center Research Institute 743,630 743,630 743,630 641,760

T73MC11044 University of Colorado at Denver 550,000 550,000 550,000 617,500

T73MC11045

a

University of Arkansas for Medical Sciences 550,000 549,999 549,114 757,995

T73MC11046 University of Connecticut Health Center 550,000 550,000 550,000 0 

T73MC11047 University of Illinois at Chicago, College of Medicine 549,999 549,998 550,000 661,752

T73MC12835 Regents of the University of Minnesota 0 450,000 550,000 627,616

T73MC19939 Georgia State University Research Foundation, Inc. 0 0 150,000 545,898

T73MC19940 Board of Regents, Nevada System of Higher Education, 

on behalf of University of Nevada at Reno

0 0 150,000 508,533

T73MC20662 University of Arizona 0 0 150,000 568,353

T73MC20663 University of Alaska Anchorage 0 0 150,000 530,039

T73MC22233 Medical University of South Carolina 0 0 0 486,440

T73MC22236 The University of Texas Health Science Center at Houston 0 0 0 509,748

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

a

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.

Total funding in fiscal year 2011 includes $65,000 of supplemental funds that the grantee received 

from HRSA’s Universal Newborn Hearing Screening program to support additional audiology 

trainees.
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 30 GAO-13-232 Combating Autism Act

Table 4: Developmental-Behavioral Pediatrics Training Program Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

T77MC00004 Case Western Reserve University $192,467 $192,467 $192,467 $192,453

T77MC00009 Montefiore Medical Center 192,467 192,467 192,467 192,467

T77MC00011 Children’s Hospital (Boston, MA) 192,467 192,467 192,467 192,467

T77MC00012 The Children’s Hospital of Philadelphia 229,048 191,943 191,944 191,943

T77MC00015 Boston Medical Center 192,467 192,467 240,467 237,019

T77MC00024 Yale University 209,605 222,467 192,467 192,467

T77MC09796 Board of Trustees of the Leland Stanford Junior University 142,467 162,467 192,467 192,467

T77MC09797 Rhode Island Hospital 142,467 142,467 192,467 222,467

T77MC09798 University of Arkansas for Medical Sciences, Cancer 

Research Center

111,143 140,102 144,948 145,000

T77MC09799 University of Oklahoma, Health Sciences Center 142,467 142,467 172,467 142,467

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

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 evidencebased interventions for children.

Table 5: National Combating Autism Interdisciplinary Training Resource Center Grantees from Fiscal Years 2008 through 

2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

UA5MC11068 Association of University Centers on Disabilities $487,641 $547,641 $637,314 $784,641

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

Note: Funding in fiscal years 2010 and 2011 includes supplemental funds of $89,673 and $147,000, 

respectively, which the grantee received from HRSA’s Universal Newborn Hearing Screening 

program to support audiology training within HRSA’s Leadership Education in Neurodevelopmental 

and Other Related Disabilities training program. 
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 31 GAO-13-232 Combating Autism Act

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.

Table 6: Autism Intervention Research Program and Autism Intervention Secondary Data Analysis Studies Program Grantees 

from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

R40MC15593 University of Colorado at Denver $0 $393,024 $400,000 $0

R40MC15594 Kennedy Krieger Institute, Inc. 0 393,024 400,000 0 

R40MC15595 University of North Carolina at Chapel Hill 0 93,533 0 0 

R40MC15596 Boston Medical Center 0 393,019 399,994 0 

R40MC15597 University of New Hampshire 0 393,024 400,000 0 

R40MC15598 Brandeis University 0 334,359 291,635 0 

R40MC16396 University of Massachusetts at Boston 0 100,000 0 0 

R40MC17158 University of North Carolina at Chapel Hill 0 0 100,000 0 

R40MC17170 Georgia State University Research Foundation, Inc. 0 0 100,000 0 

R40MC19925 The General Hospital Corporation 0 0 256,917 294,647

R40MC19926 The Curators of the University of Missouri 0 0 184,288 188,378

R40MC19927 Brandeis University 0 0 98,962 0 

R40MC19928 Boston Medical Center Corporation 0 0 299,906 298,072

R40MC20171 Georgetown University 0 0 299,993 299,955

R40MC20172 University of Connecticut Health Center 0 0 300,000 300,000

R40MC20444 West Virginia University Research Corporation 0 0 296,372 296,146

R40MC20611 Health Research, Inc. / New York State Department of Health 0 0 300,000 300,000

R40MC22641 Regents of the University of California 0 0 0 285,177

R40MC22642 Regents of the University of California 0 0 0 99,988

R40MC22643 University of Colorado at Denver 0 0 0 300,000

R40MC22644 University of Iowa 0 0 0 299,972

R40MC22645 University of Massachusetts 0 0 0 300,000

R40MC22646 University of Massachusetts at Boston 0 0 0 100,000

R40MC22647 University of North Carolina at Chapel Hill 0 0 0 100,000

R40MC22648 University of North Carolina at Chapel Hill 0 0 0 299,997

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 32 GAO-13-232 Combating Autism Act

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.

Table 7: Autism Intervention Research Network on Physical Health Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

UA3MC11054 The General Hospital Corporation $3,999,342 $3,997,824 $3,651,425 $3,999,847

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

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.

Table 8: Autism Intervention Research Network on Behavioral Health Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

UA3MC11055 Regents of the University of California $2,000,000 $1,930,288 $1,989,276 $2,000,000

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 33 GAO-13-232 Combating Autism Act

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.

Table 9: Developmental-Behavioral Pediatrics Research Network Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

UA3MC20218 The Children’s Hospital of Philadelphia $0 $0 $200,000 $220,000

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

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.2

 

2

This program comprises: State Implementation Grants for Improving Services for 

Children and Youth with Autism Spectrum Disorder and other Developmental Disabilities, 

and State Planning Grants for Improving Services for Children and Youth with Autism 

Spectrum Disorder and other Developmental Disabilities.
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 34 GAO-13-232 Combating Autism Act

Table 10: State Implementation and Planning Grants Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

H6MMC11059 The Curators of the University of Missouri a $297,957 $295,703 $467,729 $0

H6MMC11061 Utah Department of Health a 300,000 300,000 497,757 0 

H6MMC11062 The Hope School (Springfield, IL) 300,000 300,000 300,000 0 

H6MMC11063 Wisconsin Department of Health & Family Services 300,000 300,000 300,000 0 

H6MMC11064 State of Alaska, Department of Health & Social Services a 300,000 300,000 497,757 0 

H6MMC11065 State of Washington Department of Health a 300,000 300,000 497,757 0 

H6MMC15102 Rhode Island Department of Health 0 300,000 300,000 0 

H6MMC15103 University of New Mexico Health Sciences Center 0 300,000 300,000 0 

H6MMC15104 Health Research, Inc. / New York State Department of Health 0 300,000 300,000 0 

H6MMC20326 Vermont State Department of Health 0 0 272,463 300,000

H6MMC20327 Hawaii Pediatric Association Research & Education Foundation 0 0 272,463 300,000

H6MMC20328 Statewide Parent Advocacy Network of New Jersey 0 0 272,463 300,000

H6MMC20329 Maine Department of Health and Human Services 0 0 272,463 300,000

H6MMC22710 Georgia State University Research Foundation 0 0 0 75,000

H6MMC22711 Tennessee Disability Coalition 0 0 0 75,000

H6MMC22712 The Parents’ Place of Maryland 0 0 0 75,000

H6MMC22713 University of Delaware 0 0 0 74,999

H6MMC22737 Autism Society of Colorado 0 0 0 243,092

H6MMC22738 Connecticut Department of Public Health 0 0 0 243,092

H6MMC22739 Minot State University 0 0 0 243,092

H6MMC22740 University of Southern Mississippi 0 0 0 243,092

H6MMC22849 Ohio Department of Developmental Disabilities 0 0 0 243,092

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.

a

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.

Totals for this grantee in fiscal year 2010 include supplemental funding to expand its implementation 

of the Centers for Disease Control and Prevention’s (CDC) Learn the Signs. Act Early. campaign. 

This supplement is funded through an interagency agreement between HRSA and CDC.
Appendix IV: Combating Autism Act Grantees 

from Fiscal Years 2008 through 2011 by 

Program

Page 35 GAO-13-232 Combating Autism Act

Table 11: State Public Health Coordinating Center Grantees from Fiscal Years 2008 through 2011

Dollars

Fiscal year

Grant number Grantee name 2008 award 2009 award 2010 award 2011 award

U01MC11069 Association of Maternal & Child Health Programs $250,000 $250,000 $275,000 $275,000

Source: GAO analysis of Health Resources and Services Administration (HRSA) information.
Appendix V: GAO Contact and Staff 

Acknowledgments

Page 36 GAO-13-232 Combating Autism Act

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

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. 

Appendix V: GAO Contact and Staff 

Acknowledgments 

GAO Contact

Staff 

Acknowledgments 

(291011)
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