Federal Autism Activities: Agencies Are Encouraging Early Identification and Providing Services, and Recent Actions Could Improve Coordination
Released: 2016-06-20T00:00:00


Highlights: section_title: Why GAO Did This Study
paragraphs: Research has shown that early intervention can greatly improve the development of a child with autism. Children with disabilities—including children with autism—can receive intervention services through the Individuals with Disabilities Education Act. Low income children may also receive intervention services through Medicaid or CHIP, health care programs overseen at the federal level by the Centers for Medicare & Medicaid Services and administered by the states. Children of servicemembers may receive services through TRICARE, DOD's health care program.

GAO was asked to review federal autism efforts. This report describes (1) how federal agencies encourage early autism identification and interventions, and (2) the intervention services provided by federal education and health care programs. It also (3) examines steps taken by HHS and federal agencies to improve research coordination. GAO collected information on education programs in five states that were selected for size, activities, and variation in geographic location. GAO analyzed health care program data: fiscal year 2014 TRICARE data and fiscal year 2013 Medicaid and CHIP data—the most recent data available at the time of the review—from another five states selected based on the availability of reliable data. GAO also monitored the implementation of its 2013 recommendations to improve autism research coordination. Education and HHS provided comments on a draft of this report and disagreed that there is potential for unnecessary duplication. GAO continues to believe improved coordination is needed.

section_title: What GAO Found
paragraphs: Federal agencies have taken various actions to encourage early autism identification and interventions, such as specifically soliciting research in these areas. From fiscal year 2012 through fiscal year 2015, the departments of Defense (DOD), Education, and Health and Human Services (HHS), awarded about $395 million for research on early identification and interventions for autism.

Federal programs provide a variety of intervention services to young children with autism. When examining the education programs administered by five states and DOD, GAO found that specific actions were taken to help respond to the individual intervention needs of children with autism. Children enrolled in federal health care programs—Medicaid, the State Children's Health Insurance Program (CHIP), or TRICARE—received a variety of interventions. For example, GAO identified about 8,200 young children with autism in five states enrolled in Medicaid or CHIP and found that speech, language, and audiology services were the most common overall; however, the types of services commonly received varied, depending on the age of the child.

HHS has recently taken actions required by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES Act) that could help coordinate federal autism research and implement GAO's prior recommendations. For example, in April 2016, HHS designated an autism coordinator to oversee national autism research, services, and support activities. In 2013, GAO reported that there was limited coordination among agencies. This was especially concerning because GAO also found that 11 federal agencies funded autism research in the same areas—resulting in the potential for unnecessary duplication. At that time, GAO recommended that HHS improve the data it collects on autism research and that federal agencies develop methods to monitor and coordinate this research. GAO believes that HHS's continued fulfillment of certain provisions in the Autism CARES Act could help the department implement GAO's 2013 recommendations.

section_title: Letter
paragraphs: Autism is an important public health concern. Research has shown that  early intervention can greatly improve a child’s development; however,  children are not typically diagnosed until after age 4, according to  documentation from the Centers for Disease Control and Prevention  (CDC)—an agency within the Department of Health and Human Services  (HHS). Information on CDC’s website states that autism can sometimes  be detected at 18 months or younger, and a diagnosis by an experienced  professional can be considered very reliable at age 2. The Autism  Collaboration, Accountability, Research, Education, and Support Act of  2014 (Autism CARES Act) continues ongoing federal activities related to  autism, including research and health care provider training. A  congressional committee report accompanying the Autism CARES Act  strongly encourages federal agencies to focus on early diagnosis and  intervention in children ages 5 or younger when implementing the  programs and research initiatives authorized by the act. States also play  a role in early diagnosis and intervention through the federal education  and health care programs that they administer. They may take different  approaches in providing these important services, which have the  potential to improve the quality of life for children with autism and reduce  the long-term costs associated with their education and health.

In November 2013, we reported that 11 federal agencies funded autism  research from fiscal years 2008 through 2012. We found that there was  limited coordination of autism research among these federal agencies.  This was particularly concerning since we also found that each of the 11  agencies funded autism research during this time period in the same  research objective as another agency. These research objectives are  found in the strategic plan published by the Interagency Autism  Coordinating Committee (IACC)—a federal advisory committee charged  with monitoring and coordinating federal autism research. To enhance  coordination and monitoring of federal autism activities, we recommended  that HHS take specific actions to improve the usefulness of the data it  collects on these activities. We also recommended that HHS and the  departments of Defense (DOD) and Education, and the National Science  Foundation (NSF) develop identification and monitoring methods to  promote better coordination of autism research.

In light of our prior work, as well as to obtain a better understanding of  how the federal government supports early diagnosis and intervention for  children with autism, you asked us to review federal autism efforts for  young children, and recent actions taken by agencies to improve  coordination of federally funded research activities. In this report, we  1.  describe the mechanisms federal agencies use to encourage early  identification and interventions for young children with autism,  2.  describe the intervention services young children with autism receive  through federal education and health care programs, and  3.  examine the steps HHS and other federal agencies have taken to  improve coordination and help avoid unnecessary duplication in  autism research.

To describe the mechanisms federal agencies use to encourage early  identification and interventions for young children with autism, we  reviewed agency documentation, such as agency reports, and  interviewed agency officials to determine relevant programs and activities  conducted from fiscal year 2012 through 2015. Additionally, we  interviewed selected organizations that received grants from agencies  through the federal programs we identified to obtain illustrative examples  of how these programs were implemented. Lastly, we identified instances  when agencies specifically solicited research proposals on early autism  identification and interventions for young children by reviewing federal  agencies’ funding opportunity announcements (FOA)—a mechanism  used to solicit research. We also obtained data on the research projects  that agencies funded related to these topics, including amounts awarded  in each fiscal year and the specific FOAs the research projects were  funded through. We obtained most of these data directly from agencies.  In the case of the National Institutes of Health (NIH), we searched the  agency’s online database for fiscal years 2012 through 2015 using  specific search parameters. We talked to agency officials about the  research they funded, but did not independently verify the topic and study  population of the projects identified by the agencies. We assessed the  reliability of the data we obtained by gathering information from agencies  on the internal controls they use when recording and maintaining their  data. We found the agency data we collected reliable for our purposes.

We used two approaches to determine the intervention services young  children with autism receive through federal education and health  programs. For federal education programs, we reviewed documentation  on early intervention programs and special education programs that  provide services to children with special needs, including autism, under  the Individuals with Disabilities Education Act (IDEA), as amended. We  also interviewed officials from the Department of Education (Education),  the agency that oversees the administration of IDEA programs. To learn  how children with autism are served through these two IDEA programs,  we collected documentation and interviewed officials responsible for  administering the programs at the state level, as well as officials from  DOD, which administers the IDEA programs for children of  servicemembers that are served by DOD schools. We selected a non- probability sample of five states—California, Massachusetts, North  Carolina, Ohio, and Texas—to include in our review. We selected states  that represented different geographic regions of the United States and  that served a large number of children in their early intervention and  special education programs. Two states—California and Texas—were  selected because they are large states, and perhaps consequently, the  number of children identified with autism served in their special education  programs was especially large when compared to other states based on  state data reported to Education. The remaining three states— Massachusetts, North Carolina, and Ohio—were selected because they  were conducting autism-specific activities aimed at young children. Our  findings for these five states are not generalizable to other states; further,  due to our selection criteria, the states in our review may be conducting  more autism-specific activities than other states across the country.  Lastly, we reviewed Education data on the number of children ages 3 to 5  in the disability category of autism that were served in states’ special  education programs in school year 2014-2015. To assess the reliability of  these data, we reviewed documentation from Education on the  completeness, accuracy, and limitations of these data, as well as  interviewed Education officials. We found the data to be sufficiently  reliable for our purposes, with the exception of Wyoming, for which we do  not report data.

To describe the intervention services young children with autism receive  through federal health care programs, we examined the experience of  young children served by three federal health care programs: Medicaid  and the State Children’s Health Insurance Program (CHIP) in five  selected states—which are overseen at the federal level by the Centers  for Medicare & Medicaid Services’ (CMS)—and DOD’s TRICARE  program. We analyzed fiscal year 2013 Medicaid and CHIP fee-for- service claims and managed care encounter data for another non- probability sample of states—Delaware, Georgia, Illinois, Kentucky, and  Minnesota—chosen based on the availability and reliability of their  reported Medicaid and CHIP data. We also analyzed claims data from  DOD’s TRICARE program, the military’s health care system. Specifically,  we examined military treatment facility and purchased care claims data  from fiscal year 2014. For both datasets, we analyzed children ages 1  through 5 whose claims indicated they had an autism diagnosis. We  analyzed the intervention services these children received by age using a  set of procedure codes we selected based on interviews we held with  professional associations involved in providing interventions to children  with autism, among other information. To assess the reliability and  usability of the claims data for our purposes, we reviewed related  documentation, such as studies that assessed the reliability of the data,  interviewed knowledgeable CMS and DOD officials, and performed  checks of the data for consistency and completeness. We found the data  were reliable for our purposes. Because our Medicaid and CHIP data are  from five states, the results of our analyses of these data are not  generalizable across all states. See appendix I for a detailed description  of our methodology for analyzing the Medicaid, CHIP, and TRICARE  data, as well as study limitations.

To examine the steps HHS and other federal agencies have taken to  improve coordination and help avoid unnecessary duplication in autism  research, we reviewed documentation and interviewed officials at DOD,  Education, HHS, and NSF to determine what actions agencies have  taken in response to our November 2013 recommendations. We  assessed agencies’ actions against criteria established by our prior work  and which were the basis of our November 2013 recommendations,  including key practices for interagency coordination and collaboration,  and federal internal control standards related to communicating with  external entities, including other agencies.

We conducted this performance audit from February 2015 to May 2016 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 and conclusions based on our audit objectives. We believe that  the evidence obtained provides a reasonable basis for our findings and  conclusions based on our audit objectives.
subsections: section_title: Background
paragraphs: Autism is a developmental disability that can cause significant social,  communication, and behavioral challenges. Individuals with autism may  communicate, interact, behave, and learn in ways that are different from  others. The learning, thinking, and problem-solving abilities of individuals  with autism can range from gifted to severely challenged. Some  individuals with autism need extensive help in their daily lives, while  others need less. CDC estimates that about 1 in 68 children have been  identified as having autism.
subsections: section_title: Diagnosing Autism
paragraphs: Diagnosing autism involves developmental screening and a  comprehensive diagnostic evaluation. According to information on CDC’s  website, developmental screening consists of a short test to tell if a child  is learning basic skills when expected based on the child’s age, or if the  child might have delays. During developmental screening, a doctor might  ask the parent some questions or talk and play with the child to observe  whether the child plays, learns, speaks, acts, and moves as expected. A  delay in any of these areas could be a sign of a problem. The American  Academy of Pediatrics recommends that all children be screened for  developmental delays and disabilities during regular well-child doctor  visits and specifically for autism at 18 and 24 months. If a doctor identifies  any signs of a problem, a comprehensive diagnostic evaluation, which  provides a thorough review that may include looking at the child’s  behavior and development, should be performed and parents interviewed.  In many cases, the doctor may refer the child and family to a specialist,  such as a developmental pediatrician or child psychologist, for further  assessment and diagnosis.

section_title: Interventions for Autism
paragraphs: There are a variety of interventions that are used to treat young children  with autism who may face significant social, communication, and  behavioral challenges. Typical therapies include physical and  occupational therapy, speech and language therapy, and behavioral  therapies. For example, occupational therapy can teach a child skills,  such as dressing and relating to people in school and social situations, to  help the child live as independently as possible. Speech and language  therapy can help improve a child’s communication skills, such as verbal  skills or gestures. There are many types of behavioral therapies used to  treat children diagnosed with autism. For example, applied behavior  analysis (ABA) is a commonly used framework to provide intervention  services to children with autism. It uses behavior modification principles,  such as positive reinforcement, to increase or decrease targeted  behaviors. Other interventions can be incorporated into a treatment plan  for a child with autism, such as parent-implemented interventions— structured parent training programs through which parents learn  intervention practices that they can implement with their child at home  and in the community.

section_title: Federal Education Programs that Serve Young Children with Autism
paragraphs: Children with disabilities—including children with autism—can receive  intervention services through IDEA, which is overseen at the federal level  by Education. Part B of IDEA requires states to make a free appropriate  public education available to eligible children with disabilities as a  condition of grant eligibility. In general, under Part B, Education provides  formula grants to states to fund a portion of the excess costs incurred by  school districts to provide special education and related services— referred to in this report as “special education services”—to students with  disabilities ages 3 through 21, including those with autism, who meet  certain eligibility criteria. Part B of IDEA requires that the special  education services that each individual student needs in order to receive  a free appropriate public education be included in the student’s  individualized education program (IEP). Each student’s IEP must include,  among other information, the child’s present levels of academic  achievement and functional performance, measurable annual goals, and  the special education and related services to be provided to enable the  child to advance appropriately toward attaining the annual goals and to be  involved and make progress in the general education curriculum. The  IEP is developed by a team of the child’s teachers, parents, a school  district representative, other related services personnel, and whenever  appropriate, the child. DOD is also required to provide special education  services to eligible children who are served by its schools, although the  department does not receive funding from Education.

Through Part C of IDEA, Education provides formula grants to states to  fund a portion of the costs of providing early intervention services to  infants and toddlers through age 2 with developmental delays or who  have been diagnosed with a physical or mental condition with a high  probability of resulting in developmental delays. Under Part C, children  are required to have an individualized family service plan (IFSP), which  contains information about the services necessary to facilitate a child’s  development and enhance the family’s capacity to facilitate the child’s  development. Through the IFSP process, family members and service  providers are intended to work as a team to plan, implement, and  evaluate services tailored to the family’s unique resources, priorities, and  concerns related to enhancing the development of the child as identified  through the assessment of the family. Again, although DOD does not  receive funding from Education, DOD is responsible for providing early  intervention services to infants and toddlers through age 2 who are  eligible to enroll in a DOD school.

section_title: Federal Health Insurance Programs that Serve Young Children with Autism
paragraphs: Some children with disabilities—including children with autism—can  receive intervention services through federal health insurance programs  such as Medicaid, a joint federal-state program overseen by CMS that  finances the delivery of health care services for a diverse low-income and  medically needy population. Although federal law sets minimum  requirements for eligibility and coverage, states are accorded significant  flexibility to design and implement their Medicaid programs, resulting in  over 50 state programs that vary, for example, in how health care is  financed and delivered. Children whose household incomes are above  the threshold for Medicaid eligibility may have health care services  financed through their state’s CHIP. CHIP is also a joint federal-state  program overseen by CMS that states administer under broad federal  requirements; and like Medicaid, the programs vary in eligibility and  services covered. States can use Medicaid or CHIP to cover services  such as physical and occupational therapy, and speech and language  therapy, which may also be eligible IDEA early intervention and special  education services.

DOD offers health care services for active duty and retired uniformed  servicemembers and their families, as well as National Guard and  Reserve members and their families through TRICARE. Under  TRICARE, beneficiaries may obtain care from military treatment facilities  or through its purchased care system of civilian providers. The TRICARE  program offers beneficiaries a managed care option, a preferred provider  organization option, and a fee-for-service option—as well as other options  available to specific eligibility groups. For example, children of active duty  servicemembers may also qualify for the Extended Care Health Option,  which is a supplementary program that offers additional coverage to  beneficiaries with special needs. Among other requirements, beneficiaries  must have a qualifying medical condition, which includes autism, to  register in the Extended Care Health Option.

In recent years, DOD has had a series of demonstrations to increase the  provision of ABA to servicemembers’ family members who are diagnosed  with autism. In March 2008, DOD began the Enhanced Access to Autism  Services Demonstration to increase access to ABA for family members of  active duty servicemembers by allowing ABA services to be provided by  behavior technicians. In August 2012, DOD expanded ABA coverage to  non-active duty family members through the TRICARE basic program. In  July 2013, DOD began the ABA Pilot to provide supplemental ABA  services to non-activity duty family members who seek additional  services.

section_title: Coordination of Federal Autism Research and Other Activities
paragraphs: The Autism CARES Act reauthorized the Interagency Autism  Coordinating Committee (IACC), which is a federal advisory committee  that was initially established under the Children’s Health Act of 2000. The  act directs the IACC to monitor autism research—and to the extent  practicable, services and support activities—across all relevant federal  departments and agencies, including coordination of federal autism  activities. The Autism CARES Act also requires the IACC to develop and  annually update a strategic plan for autism research, as well as for  services and support activities, to the extent practicable, and make  recommendations to ensure that federal autism activities are not  unnecessarily duplicative. Further, it requires the IACC to meet at least  twice annually. As of February 2016, the IACC consisted of 16 federal  members and 15 nonfederal members, which included representatives  from advocacy groups, university professors, individuals with autism, and  parents of children with autism.

In our November 2013 report, we found that the IACC’s and federal  agencies’ efforts to coordinate and monitor federal autism activities were  limited and that the IACC’s data on autism research was outdated. We  made recommendations to address these findings. The limited  coordination was particularly concerning given that we also found that 84  percent of the autism research projects funded by federal agencies from  fiscal years 2008 through 2012 had the potential to be duplicative,  because the projects were categorized to the same research objectives in  the IACC strategic plan. The research objectives were broad enough to  fund research that may not be duplicative, and agencies funding research  in the same areas can be appropriate and advantageous—especially with  a research topic as complex and heterogenetic as autism. Further,  funding similar research on the same topic is sometimes appropriate for  purposes of replicating or corroborating results. However, agencies  funding research in the same area can also lead to unnecessary  duplication and wasting of scarce federal resources, if funding decisions  are not effectively coordinated. We concluded that the limited  coordination and monitoring of federal agencies’ autism research could  lead to numerous projects being funded to address a few specific areas  within the realm of autism research—some of the projects having the  potential to be unnecessarily duplicative—while other areas may be left  unexplored. Consistent with our November 2013 recommendations, the  Autism CARES Act directs the Secretary of Health and Human Services  to designate an existing official within HHS to oversee—in consultation  with the Secretaries of Defense and Education—national autism  research, services, and support activities. This official is required to  implement autism activities, taking into account the strategic plan  developed by the IACC, and ensure that federal autism activities are not  unnecessarily duplicative.

section_title: Agencies Used a Variety of Mechanisms to Encourage Early Identification and Interventions
paragraphs: Agencies specifically solicited research on early autism identification and  interventions, and funded research in this area as a result of these  solicitations. Other mechanisms agencies used to encourage early  identification and interventions included funding for access to care and  services, training, information resources, and awareness campaigns.  Lastly, two HHS agencies have programs that serve young children and  include developmental screenings for enrollees.
subsections: section_title: Agencies Solicited and Funded Research on Early Autism Identification and Interventions
paragraphs: Through FOAs, four agencies—DOD, Education, NIH, and the Health  Resources and Services Administration (HRSA), another HHS agency— solicited research proposals on early screening, diagnosis, and  interventions for young children with autism from fiscal years 2012  through 2015. DOD had 3 FOAs, Education had 4, HRSA had 8, and NIH  had 10 FOAs soliciting research in these areas during this time period.  As a result of these specific solicitations, these agencies funded research  projects totaling approximately $109 million during this time period.

DOD, Education, NIH, and the Administration for Community Living  (ACL), an agency within HHS, funded an additional $286 million on  research related to early screening, diagnosis, and interventions for  autism, though not through FOAs that specifically solicited this type of  research from fiscal years 2012 through 2015. For example, Education  funded autism research through FOAs that solicited projects on early  intervention and early learning in special education in general, as well as  through FOAs that solicited research on commercially viable education  technology products. NIH also funded intramural research related to  autism identification and interventions. See table 1 for the amounts that  agencies awarded through FOAs that specifically solicited research on  autism early identification and interventions from fiscal years 2012  through 2015, as well as research funded through other solicitations.

In addition to soliciting individual research projects, agencies provide  funding for centers and networks to conduct research on a variety of  autism-related topics, including early identification and interventions.  NIH solicits applications for Autism Centers of Excellence to research  autism diagnosis, treatment, and optimal means of service delivery,  among other topics. For example, officials from one Autism Center of  Excellence stated that they were developing eye tracking technology to  screen children for autism early in life, as a lack of eye contact is one of  the signs of autism. Additionally, CDC has provided supplemental  funding to six Autism and Developmental Disabilities Monitoring Network  sites to monitor the prevalence of autism in 4-year-old children to better  understand their characteristics to increase early identification.

section_title: Agencies Encouraged Early Autism Identification and Intervention by Providing Non-Research Grants and Developing Information Resources and Awareness Campaigns
paragraphs: Agencies have established various mechanisms to encourage early  screening, diagnosis, and interventions for young children with autism.  These mechanisms include grants to improve access to care and  services and increase provider training, as well as the development of  information resources, and awareness campaigns.
subsections: section_title: Grants for Improving Access to Care and Services
paragraphs: HRSA’s autism state implementation grant program provides funding to  improve access to comprehensive, coordinated health care and related  services for children and youth with autism and other developmental  disabilities. Most recently, HRSA provided multi-year funding to nine  states beginning in fiscal years 2013 and 2014. HRSA required its  grantees that received funding in September 2013 or later to focus their  efforts on promoting early identification, diagnosis, and entry into services  based on lessons learned from early state program investments and  expressed needs in the field. Officials from one of these states told us  that they pursued the grant to connect the siloed infrastructure that exists  within the state and identify children with autism at an earlier age than  was occurring in the state. This grantee has conducted activities related  to screening, assessment, and early intervention—including offering  training to primary care providers, health department officials,  interdisciplinary child development centers, and other professionals on  developmental and autism screening and autism warning signs—and has  plans for sustaining the activities beyond the 3-year grant.

section_title: Training
paragraphs: Federal agencies provide funding to train educators and practitioners. For  example, in fiscal year 2013, HRSA’s two training programs—Leadership  Education in Neurodevelopmental and Other Related Disabilities, and  Leadership Education in Developmental Behavioral Pediatrics—trained  more than 18,000 professionals, including psychologists and  pediatricians. These programs provide training on evidence-based  services for children with autism and developmental disabilities, and on  providing comprehensive diagnostic evaluations to confirm or rule out an  autism diagnosis. HRSA also collaborated with CDC in developing  Autism Case Training, which is available to the public on CDC’s website.  Autism Case Training is designed to educate future health care providers  on fundamental components of identifying, diagnosing, and managing  autism. Education also funds grants for training scholars and  professionals in special education, early intervention, and related services  programs, which could include training specific to autism.

section_title: Information Resources
paragraphs: Agencies have developed documents and websites to provide information  and resources on interventions for young children with autism. For  example, Education funded the National Professional Development  Center on Autism Spectrum Disorder to promote the use of evidence- based practices for children and youth with autism. The center identified  27 evidence-based interventions that were shown to be effective through  scientific research for individuals with autism. These interventions are  included on the center’s website, as well as instructions on implementing  the interventions and an implementation checklist. ACL funded the  organization Autism NOW, which maintains a website that provides  information and links to resources, including for early detection, early  intervention, and early education. DOD also developed a directory for  military families to provide them with information on the educational  services that are close to specific military installations in select states.  HHS and some of its agencies, such as CDC and HRSA, maintain  websites that provide resources for families and individuals with autism,  including information on diagnosing autism and interventions. Also,  another HHS agency, the Agency for Healthcare Research and Quality  (AHRQ) published a report in August 2014 on behavioral interventions for  autism that focused on children from birth to age 12. According to  AHRQ documentation, this report could be used to, among other things,  provide clinicians who treat children with autism the evidence needed for  different treatment strategies.

Furthermore, ACL provides funding to the University Centers for  Excellence in Developmental Disabilities Education, Research, and  Service, which was established in 1963 to help ensure that Americans  with disabilities can be independent and productive. ACL’s funding  supports, in part, the centers’ core functions, which include information  dissemination, research, and training of students and fellows in multiple  professional disciplines, as well as community training to professionals  working in multiple disciplines supporting individuals with disabilities.  According to ACL officials, while autism is not a specific area of emphasis  for the centers, a substantial number of their information dissemination,  research, and training activities address autism. For example, according  to ACL officials, one center disseminated autism guidelines to programs  that serve young children in its state, while another center implemented a  project to examine ways to reduce barriers to conduct screening for  developmental disabilities, including autism, in underserved populations.

section_title: Awareness Campaigns
paragraphs: Multiple federal agencies are involved in producing awareness campaigns  related to the identification of developmental delays. In March 2014, a  group of HHS agencies—the Administration for Children and Families  (ACF), ACL, CDC, CMS, HRSA, NIH, and the Substance Abuse and  Mental Health Services Administration—and Education launched the Birth  to 5: Watch Me Thrive! initiative to encourage developmental and  behavioral screening and support for children—including those with  autism—their families, and the providers who care for them. The initiative  seeks to celebrate milestones, promote universal screening, identify  possible delays and concerns early, and enhance developmental  supports. In addition, CDC’s “Learn the Signs. Act Early.” initiative  promotes awareness of healthy developmental milestones in early  childhood, the importance of tracking each child’s development, and the  importance of acting early if concerns are identified. The 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, to promote “Learn the Signs. Act  Early.” messages and tools, and improve early identification efforts in  their states and territories.

section_title: Two Federal Agencies’ Programs that Serve Children Include Screenings to Identify Developmental Concerns Early
paragraphs: ACF and HRSA have programs that include developmental screenings for  enrollees. ACF’s Head Start and Early Head Start programs promote the  school readiness of young children from low-income families from birth to  age 5. Head Start and Early Head Start programs also support the  mental, social, and emotional development of children. In addition to  education services, programs provide children and their families with  health, nutrition, social, and other services. All children in Head Start are  required to receive developmental screening—including speech, hearing,  and vision—within 45 days of the child’s entry into the program.  Children who need further specialized assessment to determine whether  they have a disability, such as autism, may be referred for an evaluation.

HRSA has three programs that seek to reduce the age at which children  are screened for developmental delays.

Title V Block Grant: This program provides grants to all states to  implement plans that address the health services needs within the  state for the target population of mothers, infants, and children,  including children with special health care needs. According to  HRSA officials, as part of this program, 40 states have selected to  address a new National Performance Measure looking at the percent  of children ages 10 months to 71 months receiving a developmental  screen using a parent-completed screening tool. The states’ intent in  selecting this measure is to increase the proportion of children,  including those with autism, who are screened at a younger age and  who receive treatment.

Early Childhood Comprehensive Systems Program: This program  awards grants to states and organizations with the goal of ensuring  that all children birth to age 3 are receiving the appropriate services at  the appropriate time. The program brings together primary care  providers, teachers, families, and caregivers to develop seamless  systems of care for children from birth to age 3 using one of three  strategies. One of these strategies is increasing developmental  screening of young children to identify and treat problems early, such  as autism. In 2013—the most recent grant competition—15 states  received grants to implement this strategy.

Federal Home Visiting Program: HRSA, in partnership with ACF,  provides funding to states for the Home Visiting Program, which  supports pregnant women and families, and helps at-risk parents of  children from birth to kindergarten access resources and develop  skills to raise children who are physically, socially, and emotionally  healthy and ready to learn. According to HRSA officials, children  enrolled in the Home Visiting Program receive an initial baseline  developmental screening and may receive additional screening  depending on how the program is administered in the state. In 2014,  HRSA revised this program to support the goal of reducing the age of  diagnosis of developmental disabilities, including autism, by bringing  together a select group of grantees to, among other things, identify  methods to increase the percentage of children who receive a  developmental screening.

section_title: State and Federal Education and Health Care Programs Provide a Variety of Intervention Services to Young Children with Autism
paragraphs: Individualized intervention services are provided to young children with  autism through IDEA early intervention and special education programs;  additionally, the five states we examined and DOD have taken specific  actions to help respond to the needs of children with autism that they  serve. Data on children with autism served through IDEA special  education programs is likely underreported as some of these children  may be counted in other disability categories, such as the development  delay category. Children enrolled in federal health care programs— Medicaid, CHIP, or TRICARE—received a variety of intervention services  through these programs.
subsections: section_title: Education Programs Provide Young Children with Autism Individualized Interventions; Selected States and DOD Conducted Autism- Specific Activities
paragraphs: Intervention services provided to young children with autism through  IDEA early intervention and special education programs are individualized  to the needs of each child; additionally, selected states and DOD have  taken specific actions to help respond to the needs of children with autism  that they serve. According to IDEA regulations, the services a child with  autism receives are determined by the team that develops the child’s  IFSP (for children in early intervention programs) and IEP (for children in  special education programs), which includes the child’s parent, and must  be individualized to the child. Officials from some of the five states we  spoke with—California, Massachusetts, North Carolina, Ohio, and  Texas—and DOD made comments regarding the need for individualized  services regardless of a child’s diagnosis. For example, some state  officials commented that specific methodologies or services—such as  ABA—could be provided to a child within the context of IDEA-required  services if these services are identified as a need for that child,  regardless of whether the child has autism or another type of  developmental disability. Further, children with autism have needs that  can vary considerably and therefore the services provided to these  children would vary. DOD officials stated that children with autism who  are eligible for special education services—like children with other  disabilities—can be provided specialized instruction, intervention  strategies, modifications of the general education curriculum, and other  related services, such as occupational therapy, physical therapy, and  speech and language services, depending on the individual needs of the  child.

The five states we examined and DOD reported taking specific actions to  help respond to the needs of young children with autism that they serve.  Some of these actions are provided to children as part of IDEA early  intervention or special education programs, while others are provided in  addition to these programs. The following are examples of actions taken.
subsections: section_title: California
paragraphs: California has 21 regional centers in the state that administer California’s  early intervention program. According to California officials, funding is  made available to each center in order to have an autism specialist on  staff that coordinates and directs the diagnostic and treatment practices  for the families that they serve.

section_title: Massachusetts
paragraphs: In 1998, Massachusetts began the autism specialty services program to  supplement its early intervention program. If a child has an autism  diagnosis and is enrolled in Massachusetts’ early intervention program,  the child can also enroll in the autism specialty services program and  receive autism-specific early intervention services, in addition to general  early intervention services. According to Massachusetts officials, the state  began the autism specialty services program because many general early  intervention providers did not have the appropriate skill set to work with  children with autism. Massachusetts has approved 17 providers for  autism specialty services across geographic areas. The families choose  providers, who are generally in their area, and the providers conduct  intake assessments. According to state officials, under the autism  specialty services program, children usually receive 10 to 30 hours a  week of intensive behavioral intervention in their homes or care centers,  in addition to general early intervention services. The autism specialty  services program uses interventions for autism including the Early Start  Denver Model, Floortime, and ABA.

According to Massachusetts officials, 1,842 children up to age 3 received  autism specialty services in the state’s fiscal year 2015. At the time of our  review, Massachusetts did not have waiting lists for the autism specialty  services program. Massachusetts officials stated that there are waiting  lists to get an autism diagnosis—a requirement to receive the specialty  services—especially in the western part of Massachusetts.  Massachusetts uses a combination of state funding, Medicaid, and  private insurance to pay for the program.

section_title: North Carolina
paragraphs: In 2010, North Carolina partnered with the Carolina Institute for  Developmental Disabilities at the University of North Carolina at Chapel  Hill to develop clinical guidelines for early intervention services for  children with autism. This effort was partially funded by ACL and HRSA  grants. The guidelines outline how to integrate information on autism into  the state’s early intervention program and contain information on  screening for autism, primary models of interventions for autism, and  working with parents to implement interventions. Additionally, in 2014,  North Carolina worked with professionals at the University of North  Carolina at Chapel Hill’s TEACCH Autism Program to organize and  conduct training for clinicians in 11 of the state’s 16 Children’s  Developmental Services Agencies—the agencies that administer the  state’s early intervention program. The training, funded by a HRSA  grant, featured the use of the Autism Diagnostic Observation Schedule,  Second Edition—a semi-structured assessment of communication, social  interaction, play, and restricted and repetitive behaviors for individuals  suspected of having autism.

North Carolina’s special education program has developed an autism  plan that outlines goals related to building capacity within the school  districts to strengthen the provision of autism interventions. For example,  this plan includes goals for providing training to teachers related to  serving children with autism. North Carolina’s special education program  also holds an annual conference that gathers together education  professionals and parents of children with disabilities and includes  sessions on serving children with autism. According to North Carolina  officials, the state also provides funding to autism teams in local school  districts that submit a plan on how they will strengthen the instructional  practices and services for children with autism in their district, including  the use of best practices.

section_title: Ohio
paragraphs: Beginning in 2008, Ohio funded the Autism Diagnosis Education Project,  which facilitates partnerships between community-based primary care  physicians and professionals providing early intervention services to  increase access to local and timely standardized, comprehensive  diagnostic evaluations for children suspected of having autism. In this  program, once an early intervention team has a question about whether a  child being served might have autism, the team works with a physician  located near the child to make (or rule out) an autism diagnosis. Since its  inception, the project has expanded to include 46 participating counties,  330 early intervention professionals, and 39 partner physicians, and the  average age of diagnosis has decreased to 29 months. From January 1,  2013, through May 21, 2015, 301 children were assessed in the program  and 52 percent were diagnosed with autism. This project is funded  through state funds.

In 2011, Ohio began to implement an early intervention program across  the state, referred to as the Play & Language for Autistic Youngsters  (PLAY) project. PLAY is a parent-implemented intervention. Specifically,  the PLAY project trains early intervention specialists on certain principles,  methods, and techniques that emphasize following the child’s lead as a  means for improving social impairment, a core symptom of autism. These  early intervention specialists teach parents how to implement and use the  intervention in everyday interactions with their child—PLAY providers ask  parents to implement PLAY 15 to 20 hours a week. The state has held  four trainings since 2011 with about 150 participants. According to Ohio  officials, of Ohio’s 88 counties, 45 have early intervention specialists who  are either trained, or are in the process of being trained, in PLAY. An  additional 17 counties have access to PLAY providers. For children  enrolled in Ohio’s early intervention program, the PLAY curriculum may  be indicated as an early intervention service need on a child’s IFSP if the  IFSP team believes that the PLAY methods and strategies can better help  address the family’s outcomes than more traditional service delivery  methods, according to Ohio officials. The state, which funds the PLAY  project trainings through its general revenue fund, has received positive  feedback from the providers and families involved in the PLAY project.

section_title: Texas
paragraphs: In 2007, Texas began requiring the team that develops an IEP to consider  11 strategies when forming IEPs for children diagnosed with autism  enrolled in its special education program through what is known as the  Autism Supplement. According to Texas officials, the Autism  Supplement was designed so that the IEP team would look at the unique  characteristics of children with autism. Because not all strategies may be  suitable for use with every child, the team has the option to exclude any  of the 11 strategies from the IEP, but must provide a written rationale for  the exclusion.

In 2008, Texas established the Autism Program, which provides ABA to  children diagnosed with autism. According to Texas officials, the purpose  of the program is to make ABA more accessible, particularly to children  diagnosed with autism who are having difficulty in school. The Autism  Program is not part of Texas’ special education program, but frequently  serves children who are enrolled and receiving services through its  special education program. According to Texas officials, the program  works with the school districts to avoid duplication of services the districts  provide and to make ABA services available after school. Board certified  behavior analysts provide oversight and treatment plans; actual treatment  services are largely provided by registered behavior technicians.

According to Texas officials, about 295 children were served by the  Autism Project in the state’s fiscal year 2014—84 of which were ages 3  through 5. According to these officials, the program is funded through  Texas’ general revenue fund and a limited amount of private insurance  reimbursement. At the time of our review, the program maintained a  waiting list of about 1,150 children and had eight providers in six  communities due to limited funding, so very few counties in Texas were  covered. State officials noted that this number was likely to increase due  to action taken during a previous state legislative session to increase  funding.

In April 2015, after learning about the PLAY project in Ohio, the Wright- Patterson Air Force Base in Ohio began a PLAY project pilot funded for  one year by the Air Force Surgeon General. Two full time staff were hired  and trained in PLAY. The pilot has provided PLAY training to 24 enrolled  families as an intervention parents can implement with their children  diagnosed with autism ages 18 months to 6 years to improve social  interactions. PLAY is a transportable intervention parents can take with  them when they move to a new duty station. In April 2016, Air Force  officials told us that the pilot had been funded through fiscal year 2019.  DOD officials told us that it supports continued Air Force funding to allow  sufficient time to determine outcomes of the pilot. Additionally, according  to DOD officials, autism specialists are available to all DOD schools  needing assistance with the education of a child age 3 and older with  autism.

section_title: Number of Children with Autism Receiving Intervention Services through Special Education Programs is Likely Underreported
paragraphs: Data reported to Education from 49 states and the District of Columbia  indicate that approximately 66,000 children ages 3 through 5 with autism  received services in school year 2014-2015. However, this is likely an  undercount of the children with autism receiving special education  services, because children with autism may not be reported to Education  under the autism disability category. For children enrolled in special  education programs, states are required to report to Education the  number of children receiving services by disability category, including  autism. However, states may use a general disability category,  “developmental delay,” when reporting, either because the child may not  yet be diagnosed with autism, or the child may be diagnosed, but the  parents prefer to use the general disability category for privacy  purposes. Further, communication difficulties are a typical symptom of  autism, and Education, DOD, and some state officials also told us that  children with autism may be reported under the disability category  “speech and language impairment.” Children who are placed in the  “developmental delay” or “speech and language impairment” category  would not appear in the autism category. Certain states’ use of disability  categories may also influence the number of children with autism reported  by the state. For example, California and Texas do not allow the use of  the “developmental delay” category. Ohio pays its school districts based  on the number of children served and their disability categories; school  districts get more funding for students in the “autism” disability category  than those in the “developmental disability” category. See appendix II  for the number of children ages 3 through 5 in states’ special education  autism category, by state, in school year 2014-2015.

The actual number of children with autism receiving early intervention  services is also unknown. States are required to report to Education the  total number of children served under early intervention programs, but not  by disability category. DOD also does not collect these data. DOD and  Education officials both stated the specific disability designation of a child  does not dictate the types of early intervention services that a child  receives. Further, it is common for children under age 3 to not have a  specific diagnosis.

section_title: Young Children with Autism Enrolled in Selected States’ Medicaid or CHIP Programs, or TRICARE Received a Variety of Intervention Services
subsections: section_title: Medicaid and CHIP
paragraphs: Children enrolled in Medicaid or CHIP from our five selected states— Delaware, Georgia, Illinois, Kentucky, and Minnesota—received a variety  of intervention services during fiscal year 2013. Specifically, we  identified 8,208 children ages 1 through 5 with autism in these states and  almost all received intervention services. Children age 5 accounted for  the largest age group of children that we identified with autism; however,  a large proportion of children were ages 3 and 4. We also found that  nearly 20 percent of children identified with autism were ages 1 or 2. See  figure 1 for the distribution of children enrolled in Medicaid or CHIP from  these five states and identified with autism by age.

Over half of the services young children identified with autism received  were within the speech, language, and audiology category and the  physical and occupational therapy category—with the former category  making up about one-third of the total intervention services received by  these children in fiscal year 2013. See figure 2 for the percentage of  intervention services received by service category.

When services received are examined by age group, speech, language,  and audiology services remain the most commonly received services;  however, there is variation in the other categories of services received.  Among children ages 1 and 2, physical and occupational therapy were  nearly as common as speech, language, and audiology services, and  behavioral services and home care and skills training were less common.  Beginning at age 3, behavioral services and home care and skills training  became more frequently received. Figure 3 shows the category of  services received by young children identified with autism by age group.

While autism services are not a specified Medicaid benefit, CMS issued  an informational bulletin in July 2014 that may result in more children  receiving these services under Medicaid. Specifically, the informational  bulletin clarified states’ options for providing autism-related services to  children under various Medicaid authorities. It also discussed  requirements related to services for children under the Early and Periodic  Screening, Diagnostic, and Treatment (EPSDT) benefit. Some states  have been using other Medicaid authorities, such as home and  community-based services waivers, to provide behavioral therapy  services, such as ABA. Because waivers cover a limited number of  beneficiaries, states’ Medicaid programs may not have been able to fulfill  the need for services of children with autism through a waiver. CMS  officials told us that the clarifying bulletin would likely result in an increase  in the number of children receiving such services, as states may have to  transition these individuals to the EPSDT benefit under their state plans,  which must be furnished to beneficiaries statewide. For at least one  state, this may already be the case. Utah Department of Health officials  told us that they transitioned to provide ABA services under their state  plan in July 2015 as a result of this guidance. While about 380 children  received services under Utah’s autism waiver in the state’s fiscal year  2015, that number increased to about 455 in the first 5 months following  the transition, and officials estimate that approximately 4,000 children  may now be able to receive autism services through their state plan.  CMS officials stated that states may choose to amend their state plan to  include autism treatment services in an effort to be more transparent  about the services available to children diagnosed with autism. At the  time of our review, CMS officials indicated that 7 states had recently  approved Medicaid state plans to include autism treatment services, and  an additional 18 states have either submitted draft changes to their  Medicaid state plan—known as amendments—to cover such services or  are in discussions with CMS officials about the autism treatment services  they propose to cover in the state plan.

Children enrolled in DOD’s TRICARE that were identified with autism  received a variety of intervention services in fiscal year 2014. Specifically,  8,103 children ages 1 through 5 identified with autism were eligible to  receive services through TRICARE and almost all received services.  About half of the children identified with autism were ages 3 and 4, and  about 30 percent of children identified with autism were ages 1 or 2. See  figure 4 for the distribution of children identified with autism by age.

Unlike Medicaid and CHIP beneficiaries, we found that young children  enrolled in TRICARE and identified with autism most commonly received  behavioral services, which comprised about one-third of intervention  services received by these children. However, speech, language, and  audiology services, and physical and occupational therapy services still  made up a large portion of the intervention services received by these  children. See figure 5 for the percentage of intervention services received  by service category.

When services received are examined by age group, behavioral services  remain the most commonly received services by children in most age  groups; however, there is variation in the other categories of services  received. At age 1, children most commonly received speech, language,  and audiology services; physical and occupational therapy were also  commonly received. Among children age 2, behavioral services were  about as common as physical and occupational therapy, and speech,  language, and audiology services. Behavioral services were notably more  common than other services among children ages 3 through 5. (See fig.  6.)

In 2014, DOD offered ABA to children—who were TRICARE beneficiaries  and had an autism diagnosis—through autism demonstrations. Of the  approximately 8,103 children enrolled in TRICARE that we identified with  autism, 3,788 (47 percent) were enrolled in the demonstrations. Most of  the behavioral services received by children through TRICARE went to  those who participated in the demonstration—an expected finding given  that the demonstration focused on providing ABA and related behavioral  services that may not have been as readily accessible by non- participants. Overall, children enrolled in the demonstrations received  nearly three times as many intervention services as children who were  not enrolled in the demonstrations. See figure 7 for the percentage of total  intervention services received by children who were enrolled in the  demonstrations compared to those who were not enrolled in the  demonstrations.

Information on the expenditures related to providing intervention services  to young children identified with autism enrolled in Medicaid, CHIP, and  TRICARE is available in appendix III.

section_title: Recent Actions by HHS Could Improve Monitoring of Federally Funded Autism Research to Avoid Unnecessary Duplication
paragraphs: HHS has recently taken steps that could help address recommendations  we made in November 2013. Specifically, to promote better federal  coordination and avoid the potential for unnecessary duplication, we  recommended that (1) the IACC and NIH identify projects through the  department’s monitoring of federal autism activities that may be  unnecessarily duplicative and thus candidates for consolidation or  elimination, and (2) DOD, Education, HHS, and NSF determine methods  for identifying and monitoring the autism research conducted by other  agencies. To develop these recommendations, we applied criteria from  federal internal control standards and best practices for collaboration from  our prior work, which state that tracking and monitoring are key activities  that can benefit interagency collaborative mechanisms. Since our 2013  report was issued, HHS has continued to disagree that our  recommendations were warranted.

HHS has recently taken actions required by the Autism CARES Act that  could help coordinate federal autism research and implement our  recommendations. First, as directed by the act, the Secretary of Health  and Human Services designated an official to serve as the Autism  Coordinator to oversee national autism research, services, and support  activities and ensure that autism activities funded by HHS and other  federal agencies are not unnecessarily duplicative. HHS announced this  designation in April 2016, while a draft of this report was at the  department for comment. Second, the Autism Cares Act requires that  the IACC’s strategic plan include recommendations to ensure that autism  research funded by HHS and other federal agencies is not unnecessarily  duplicative. While the 2013 strategic plan—released in April 2014—is  the most recent plan, an update to the plan has been under discussion  since late 2015. Specifically, the IACC met for the first time as a full  committee in November 2015—16 months after its last full committee  meeting. During this meeting, as well as subsequent meetings in  January and April 2016, NIH staff and IACC members discussed updating  the strategic plan. The requirement to include the aforementioned  recommendations was discussed; however, no specific details for how  this will be accomplished were identified.

In addition to recent steps taken by HHS in response to Autism CARES  Act requirements, NIH also released fiscal year 2011 and 2012 data on  federal autism research, which the agency collects on behalf of the IACC.  These data were made available in April 2016, while a draft of this report  was at the department for comment. Specifically, these data were  released into the Autism Spectrum Disorder Research Portfolio Analysis  Web Tool (Web Tool), the IACC’s online database on autism research.  Prior to this new release, the Web Tool contained fiscal year 2008  through 2010 data. NIH, on behalf of the IACC, also released the 2011- 2012 IACC Portfolio Analysis Report, which provides an analysis of  autism research funding in 2011 and 2012, as well as a five-year  overview of autism research funding by the U.S. government and private  sector and five-year trends (2008 through 2012) by each of the seven  research areas in the IACC’s strategic plan. NIH officials told us that  they have also collected data on autism research that was federally  funded in fiscal year 2013 and plan to release that data in the second half  of calendar year 2016.

Although HHS continues to disagree that our recommendation to develop  methods for improved cross-agency coordination was warranted, HRSA  took a positive step in April 2014 by contacting DOD to determine  whether any potential overlap existed between the agencies’ programs.  HRSA officials told us that they reviewed abstracts of all currently funded  DOD research projects and found no scientific overlap. HRSA officials  also used information from DOD, HHS agency websites, and NIH’s online  database when developing new FOAs. For example, in two FOAs HRSA  chose to focus exclusively on populations served by HRSA’s Maternal  and Child Health Bureau in order to help avoid potential duplication with  other federal agencies.

During our review, NIH officials reiterated their position that they believe  their processes are adequate to avoid unnecessary duplication and  provided us with the 2012 program officer handbook, which outlines the  responsibilities of NIH program officers—some of which will help avoid  potential unnecessary duplication and were included in our November  2013 report. According to NIH officials, a fundamental part of an NIH  program officer’s responsibility is to assure that federal taxpayer funds  are expended on research projects that will produce the most effective,  efficient, and productive results. The program officer handbook outlines  project officers’ responsibility to stay abreast of the scientific literature and  attend professional and scientific meetings, which we reported in  November 2013. It also discusses the officers’ role in reviewing the “other  support” section of research applications. This section details the other  active and pending funding available in direct support of an individual’s  research endeavors and is provided by the applicant for all individuals  designated in a research application as a principal investigator. Program  officers must review this section for scientific overlap, among other  information. While this type of review is important, as we described in  our November 2013 report, it only helps to ensure that an applicant, and  the applicant’s principal investigator, is not submitting essentially the  same research application to multiple funding sources. This review would  not uncover research from different applicants with different principal  investigators, which have already been funded, and that may be  unnecessarily duplicative of the applicant’s research; in other words, a  project with the same purpose, strategies, and target population that is  not necessary to corroborate or replicate prior research results. The  program officer handbook also includes a description of several  databases and web-based tools that are available for the program  officers’ use in fulfilling their responsibilities. However, although this  information is provided to program officers, NIH officials told us that the  agency does not dictate which specific tools or databases program  officers should use to identify similar grants by a different principal  investigator for each grant funding decision. NIH continues to have limited  procedures in place to help ensure that program officers identify  potentially unnecessarily duplicative research by different principal  investigators when making funding decisions.

Officials from the other agencies that were included in our  recommendation—DOD, Education, and NSF—told us that they have  taken initial steps to monitor other federal agencies’ research. DOD  officials told us that the department has finalized an interagency  agreement with NIH to complete a pilot study aimed at developing  requirements and testing the feasibility of transferring DOD medical  research application data to a NIH data system. According to DOD  officials, this transfer of data would allow multiple agencies and the public  to view research application data to assist in the identification of potential  duplication and facilitate funding decisions. DOD officials anticipate that  the feasibility studies will conclude by June 2016. Additionally, Education  officials told us that they have reached out to HHS and are awaiting  guidance on coordination from HHS and in the interim will continue to  participate in IACC meetings. Education officials also stated that the  department anticipates funding, pending congressional appropriations,  model demonstrations projects focused on autism. These projects will  build on existing research on promising evidence-based practices for  autism by identifying challenges associated with their implementation.  According to Education officials, the department will coordinate with the  IACC and review relevant research prior to soliciting applications related  to these research projects. Also, even though the agency is not a member  of the IACC, NSF officials told us that they observe IACC meetings when  convened and check the IACC’s Web Tool to monitor autism research  funded by other federal agencies and to help avoid unnecessarily  duplicative research.

We acknowledge the steps taken by the agencies to respond to our  November 2013 recommendation, as well as in response to the Autism  CARES Act; however, continued action is needed to develop these initial  steps into methods for identifying and monitoring federal autism research  that are consistently applied. This is especially important given that, as  we previously reported in November 2013, agencies are funding research  in the same areas, which creates the potential for unnecessary  duplication. While we are not making additional recommendations, we  believe that our 2013 recommendations remain valid, and that HHS’s  continued fulfillment of the provisions in the Autism CARES Act could  help the department implement our recommendations.

section_title: Agency Comments
paragraphs: We provided a draft of this report to DOD, Education, HHS, and NSF for  review and comment. Education and HHS provided written comments,  which are reprinted in appendixes IV and V. These departments, along  with DOD, also provided technical comments, which we incorporated as  appropriate. NSF did not provide any comments.

Education and HHS directed many of their comments to our third finding,  which updated the status of agency actions to implement  recommendations contained in our November 2013 report. In that report,  we found that many autism research projects funded by federal agencies  had the potential to be duplicative, because the projects were categorized  to the same research objectives in the IACC strategic plan. In their  comments on this report, Education and HHS disagreed that there was  potential for duplication and questioned the basis of our analysis. The  departments stated that the 78 research objectives—which our analysis  was based on—are broad, and therefore, may require attention from  researchers of different disciplines in order to address the complexity and  heterogeneity of autism. This may necessarily involve funding of multiple  projects from more than one federal agency. Education stated that a  careful review of the projects themselves is needed to determine actual  duplication.

As we noted in our 2013 report, we agree that it may be appropriate and  advantageous to have multiple projects and agencies address the same  research objective. We also agree that the specific projects identified as  potentially duplicative would need to be reviewed further to identify actual  duplication and believe such a review of these data is important to ensure  federal funds are used efficiently and effectively so that informed  decisions can be made. Our finding that agencies are funding research in  the same research areas highlights how imperative it is that agencies  effectively coordinate and monitor each other’s autism research. It was  the limited coordination and monitoring that we identified in our prior work  that was the basis for our prior recommendations. Based on the  comments received, we revised the report to acknowledge the breadth of  the research objectives and to emphasis our prior findings as they relate  to the need for improved coordination and monitoring.

HHS also commented that staff in its agencies, including NIH, avoid clear  and obvious overlap or unnecessary duplication. HHS stated that they do  this by utilizing the research project information in their internal database,  Information for Management, Planning, Analysis, and Coordination  (IMPAC II), which contains detailed pre-award and award data for four  HHS agencies— AHRQ, CDC, the Food and Drug Administration, and  HRSA—and some research applications and grants of the Department of  Veterans Affairs, as well as participating in the IACC. Further, HHS stated  that NIH’s internal autism coordinating committee coordinates research  internally within NIH. The use of databases and participation in the IACC  as a means to coordinate and monitor across agencies is information that  we have reported on in this report and our November 2013 report. We  continue to believe that these methods are limited. Further, while we  appreciate HHS’s comment that it is taking steps to avoid clear and  obvious unnecessary duplication, this is not sufficient given the  substantial federal investment in this area. From fiscal years 2008  through 2012, agencies awarded funds of about $1.2 billion for autism  research, and many funded research in the same areas. Autism is an  important and complex public health concern affecting a large number of  individuals, which makes it all the more important that scarce federal  resources be used efficiently and strategically. Prudent stewardship  requires a careful assessment and coordinated effort to look for  unnecessary duplication that may be less than obvious.

Lastly, HHS stated that our draft report was incorrect in stating that the  Web Tool was the primary tool by which potentially duplicative autism  research is to be identified. The department stated that IMPAC II  database is used by NIH program officers when evaluating research grant  applications. Our draft report did not state that the Web Tool was the  primary tool used to identify potentially duplicative autism research;  however, we revised the report to clarify information presented on the  Web Tool.

In its comments, Education also stated that the draft report properly  acknowledged the health care and educational programs that provide  intervention services to young children with autism. Further, the  department stated that it stands ready to work with HHS as HHS  implements the Autism CARES Act and that a significant body of  research is still needed to better understand and address the  developmental academic needs of students with autism, especially given  the great variations across the autism spectrum and the range of student  learning needs.

As agreed with your offices, unless you publicly announce the contents of  this report earlier, we plan no further distribution until 30 days from the  report date. At that time, we will send copies of this report to the  appropriate congressional committees, the Secretary of Health and  Human Services, Secretary of the Department of Defense, the Secretary  of the Department of Education, the Director of the National Science  Foundation, and to other interested parties. 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 VI.

section_title: Appendix I: Detailed Scope and Methodology for Analyzing Health Care Data
paragraphs: We examined the intervention services that are provided to children with  autism through federal health care programs. More specifically, to do this  we analyzed fiscal year 2013 fee-for-service claims and managed care  encounter data from the Centers for Medicare & Medicaid Services’  (CMS) Medicaid and Statistical Information System (MSIS) for five select  states. We also analyzed fiscal year 2014 Department of Defense (DOD)  TRICARE military treatment facility and purchased care claims data. At  the time we began our review, these were the most recent fiscal years for  which CMS’s and DOD’s data were available. Our analysis consisted of  the following three steps: (1) state selection for CMS data, as well as  assessing data reliability for both our selected states’ and DOD’s data; (2)  identification of children with autism; and (3) identification of intervention  services for children with autism. Lastly, we describe the limitations of our  methods.
subsections: section_title: State selection and data reliability
paragraphs: We selected five states to include in our analysis of health care data— Delaware, Georgia, Illinois, Kentucky, and Minnesota. We chose these  five states based on the availability and reliability of their reported  Medicaid and State Children’s Health Insurance Program (CHIP) data in  MSIS. Specifically, at the time we began our review, there were 35 states  that had validated fiscal year 2013 MSIS data from which we could  choose. To determine which of these 35 states to include in our review,  we reviewed reports with information on states use of managed care  organizations and the completeness and reliability of states’ managed  care encounter data in MSIS. Similarly, we reviewed reports on states’  use of behavioral health organizations to provide certain services—since  those organizations may be used to provide some of the intervention  services included in our review—and the extent to which states’ data in  MSIS on services provided by behavioral health organizations is reliable  and complete. Lastly, we reviewed reports with information on the  completeness and reliability of states’ CHIP data in MSIS.

We discussed the reliability and usability of the five states’ data with  knowledgeable officials from CMS, its contractor responsible for  processing Medicaid and CHIP data reported from states (Mathematica  Policy Research), and selected state officials. We discussed the reliability  and usability of the TRICARE data with knowledgeable DOD officials. We  performed data checks, such as examining the data for missing values  and obvious errors, to test the internal consistency and reliability of the  data. These data were found to be reliable for our purposes.

section_title: Beneficiary identification
paragraphs: Based on eligibility information in the MSIS eligibility file and the  TRICARE beneficiary file, we restricted our study to children who were (1)  age 1 through age 5 at the beginning of the fiscal year, and (2) enrolled in  one of these programs for at least 10 months. We limited our review to  only those children we identified with autism. For purposes of this report,  we considered a child to have autism if the child had at least one claim  with an autism diagnosis code at any point in the fiscal year.

section_title: Service identification
paragraphs: We focused our review on non-institutional services contained within the  MSIS other services file and the TRICARE non-institutional file.

There is no standard set or list of procedure codes that are used by  providers to report the provision of intervention services to children with  autism. Therefore, we developed a list of procedure codes that could  closely reflect the provision of intervention services to young children with  autism. To do this, we took the following four steps.  1.  We reviewed documentation and interviewed federal agency officials,  as well as officials from non-federal entities, such as the American  Academy of Pediatrics, to gather general information on typical  interventions for young children with autism.  2.  We identified the procedure codes found on claims with an autism  diagnosis code in our dataset and examined the definitions of these  codes.  3.  We discussed procedure codes relevant to providing interventions to  children with autism with representatives from the following seven  professional associations: American Academy of Child & Adolescent  Psychiatry; American Physical Therapy Association; American  Occupational Therapy Association; American Psychiatric Association;  American Psychological Association; American Speech, Hearing, and  Language Association; and Association of Professional Behavioral  Analysts.  4.  In recognition of variations in the practice of medicine across  geographic regions, we gathered information from all five selected  states about their use of certain procedure codes to determine if the  use of these codes typically reflected the delivery of an intervention  service for autism in their respective states.

Based on the information gathered, we identified a list of procedure codes  that appeared to reflect common autism-related interventions. The  intervention services in our review also include related diagnostic or  evaluation services. When generating the list of procedure codes, it was  not possible for us to parse out intervention services from assessment- type services because, in general, an assessment is needed in order to  determine the best intervention approach and to adjust that approach  over time. Further, we heard from the association officials we interviewed  that providers are frequently assessing at the same time they are  providing an intervention.

For reporting purposes, we categorized the procedure codes we identified  into five broad categories.  1.  Behavioral, which includes psychiatry services, health and behavioral  assessments and intervention services, and applied behavior  analysis.  2.  Evaluation and management, which includes central nervous  system tests, office or other outpatient visits or consultations, and  medical team conferences to diagnose and develop intervention  strategies.  3.  Home care and skills training, which includes teaching skills to the  child and the child’s family to promote the child’s development and  independent living.  4.  Physical and occupational therapy, which includes the provision of  therapies to, for example, teach a child how to develop movements  involved with walking, eating, or communicating.  5.  Speech, language, and audiology, which includes evaluation and  treatment of speech, language, voice, communication, and auditory  processing.

To the extent possible, we based our categorization on the American  Medical Association’s Current Procedural Terminology codebook,  although our categories are broader than those found in this codebook.  We asked experts from each of the seven professional associations to  comment on our categorization. We received responses from five of the  seven associations. Three of the five associations—American Academy  of Child & Adolescent Psychiatry, American Physical Therapy Association  and Association of Professional Behavioral Analysts—agreed with our  categorization. The other two—American Occupational Therapy  Association, and American Speech-Hearing-Language Association—were  concerned that putting a procedure code in the “behavioral” category, for  example, might imply that the code cannot appropriately be used by  professionals, such as speech and language pathologists or occupational  therapists. This is not the intention of our categorization, nor should our  categories be considered as billing advice to be associated with or used  for billing purposes. In fact, we found that four of the seven associations  stated that their professionals used codes that fall within our “behavioral”  category, and five of the seven used codes that fall with our “evaluation  and management” category, among others. See table 2 for the procedure  codes included in our review and the categories of interventions they fall  under for the purposes of our report.

section_title: Limitations
paragraphs: Because our Medicaid and CHIP data are from five states, the results of  our analyses of these data are not generalizable across all states. The  intervention services in our review only reflect services identified by the  procedure codes included in our review, and as a result, the amount of  services we report may be an undercount. Based on our methodology, we  believe the list of procedure codes is appropriate and fairly represents  interventions provided to children with autism. Because we included all  claims of children identified with autism (with relevant procedure codes)  due to the potential for inconsistency in the diagnosis codes included on a  claim, some of the services in our review may not have been provided for,  or relate to, the treatment of autism. In these cases, the amount of  services we report may be over reported.

section_title: Appendix II: Number of Children Age 3 through 5 in States’ Special Education Autism Category
paragraphs: The Department of Education requires states to report the number of  children ages 3 through 5 enrolled in the states’ special education  program by disability category—such as autism. The number of children  reported in the autism category is likely less than the actual number of  children with autism being served by states. Children with autism may be  categorized under other categories including a general disability category,  “developmental delay,” or the category, “speech and language  impairment,” because communication difficulties are a typical symptom of  autism. The data provided to Education indicate that approximately  66,000 children ages 3 through 5 under the autism category received  services in school year 2014-2015, as shown in table 3.

section_title: Appendix III: Selected Federal Health Expenditures for Intervention Services Provided to Children with Autism
paragraphs: We examined certain expenditures for the provision of intervention  services to children ages 1 through 5 identified with autism and enrolled  in the Centers for Medicare & Medicaid Services’ Medicaid program, the  State Children’s Health Insurance Program (CHIP), and the Department  of Defense’s (DOD) TRICARE program.
subsections: section_title: Medicaid and CHIP Fee-For-Service Expenditures
paragraphs: We examined fiscal year 2013 Medicaid and CHIP expenditure data in  fee-for-service claims for five states: Delaware, Georgia, Illinois,  Kentucky, and Minnesota. Fee-for-service claims were about 87 percent  of the total intervention services provided to children identified with autism  that we reviewed, with managed care encounters making up the  remaining portion of services provided. See table 4 for the expenditures  on intervention services provided to children identified with autism  enrolled in Medicaid and CHIP, by service category.

section_title: TRICARE Purchased Care Expenditures
paragraphs: We examined fiscal year 2014 expenditures for TRICARE purchased care  claims. Purchased care claims were about 96 percent of the total  intervention services provided to children identified with autism that we  reviewed, with military treatment facility claims comprising the remainder  of services provided. We examined the expenditures for those young  children who were enrolled in DOD’s autism demonstrations—which  offered increased access to applied behavior analysis (ABA) to  servicemembers’ family members diagnosed with autism—as well as  those who were not enrolled in the demonstration. See table 5 for  expenditures on intervention services provided to children identified with  autism enrolled in the TRICARE autism demonstrations, and those who  received such services but were not enrolled in the demonstration, by  service category.

section_title: Appendix IV: Comments from the Department of Education

section_title: Appendix V: Comments from Department of Health and Human Services

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

section_title: Staff Acknowledgments
paragraphs: In addition to the contact named above, Geri Redican-Bigott, Assistant  Director; Deirdre Gleeson Brown; Jackie Hamilton; Giselle Hicks; Drew  Long; Brandon Nakawaki; Vikki Porter; Sarah Resavy; and Eric Wedum  made key contributions to this report.

section_title: Related GAO Products
paragraphs: Federal Autism Research: Updated Information on Funding from Fiscal  Years 2008 through 2012. GAO-15-583R. Washington, D.C.: June 30,  2015.

Federal Autism Activities: Funding and Coordination Efforts.  GAO-14-613T. Washington, D.C.: May 20, 2014.

Federal Autism Activities: Better Data and More Coordination Needed to  Help Avoid the Potential for Unnecessary Duplication. GAO-14-16.  Washington, D.C.: November 20, 2013.

Combating Autism Act: HHS Agencies Responded with New and  Continuing Activities, Including Oversight. GAO-13-232. Washington,  D.C.: February 27, 2013.

Federal Autism Activities: Funding for Research Has Increased, but  Agencies Need to Resolve Surveillance Challenges. GAO-06-700.  Washington, D.C.: July 19, 2006.

Special Education: Children with Autism. GAO-05-220. Washington, D.C.:  January 14, 2005.


Question-summary annotations: questions: question: What did GAO find regarding autism intervention services?
answer: Federal programs provide a variety of intervention services to young children with autism. When examining the education programs administered by five states and DOD, GAO found that specific actions were taken to help respond to the individual intervention needs of children with autism.
child_questions: question: How do children receive these intervention services?
answer: Children enrolled in federal health care programs—Medicaid, the State Children's Health Insurance Program (CHIP), or TRICARE—received a variety of interventions.

question: What did GAO find regarding the nature of these interventions?
answer: Children enrolled in federal health care programs—Medicaid, the State Children's Health Insurance Program (CHIP), or TRICARE—received a variety of interventions. For example, GAO identified about 8,200 young children with autism in five states enrolled in Medicaid or CHIP and found that speech, language, and audiology services were the most common overall; however, the types of services commonly received varied, depending on the age of the child.

questions: question: How has HHS helped coordinate federal autism research?
answer: HHS has recently taken actions required by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES Act) that could help coordinate federal autism research and implement GAO's prior recommendations. For example, in April 2016, HHS designated an autism coordinator to oversee national autism research, services, and support activities.

question: What did GAO learn regarding coordination between agencies?
answer: In 2013, GAO reported that there was limited coordination among agencies.
child_questions: question: Why is limited coordination among agencies concerning?
answer: This was especially concerning because GAO also found that 11 federal agencies funded autism research in the same areas—resulting in the potential for unnecessary duplication.

question: What did GAO recommend to HHS?
answer: At that time, GAO recommended that HHS improve the data it collects on autism research and that federal agencies develop methods to monitor and coordinate this research.
child_questions: question: What would be the benefit to HHS of fulfilling these provisions?
answer: GAO believes that HHS's continued fulfillment of certain provisions in the Autism CARES Act could help the department implement GAO's 2013 recommendations.

questions: question: What has research on autism discovered?
answer: Research has shown that early intervention can greatly improve the development of a child with autism.

question: What does the Individuals with Disabilities Act do for children?
answer: Children with disabilities—including children with autism—can receive intervention services through the Individuals with Disabilities Education Act.
child_questions: question: What are other services that children can use to receive care?
answer: Low income children may also receive intervention services through Medicaid or CHIP, health care programs overseen at the federal level by the Centers for Medicare & Medicaid Services and administered by the states.

question: How else can children of servicemembers receive care?
answer: Children of servicemembers may receive services through TRICARE, DOD's health care program.

questions: question: What were the results of the review on federal autism efforts conducted by GAO?
answer: This report describes (1) how federal agencies encourage early autism identification and interventions, and (2) the intervention services provided by federal education and health care programs. It also (3) examines steps taken by HHS and federal agencies to improve research coordination.

question: How did GAO select the states for its review?
answer: GAO collected information on education programs in five states that were selected for size, activities, and variation in geographic location.

question: What data did GAO analyze?
answer: GAO analyzed health care program data: fiscal year 2014 TRICARE data and fiscal year 2013 Medicaid and CHIP data—the most recent data available at the time of the review—from another five states selected based on the availability of reliable data. GAO also monitored the implementation of its 2013 recommendations to improve autism research coordination.

question: What was the response of Education and HHS to the review?
answer: Education and HHS provided comments on a draft of this report and disagreed that there is potential for unnecessary duplication.