Background

This chapter provides an overview of the Department of Health and Human Services Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism CARES Act of 2014 (FY 2014 – FY 2018), a report prepared to meet the requirements of the Autism CARES Act of 2014 that describes federal agency activities related to ASD during the specified time period. This overview provides a summary of federal agency activities and programs that are addressing various areas that are targeted in the 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder.

The Department of Health and Human Services Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism CARES Act of 2014 (FY 2014 – FY 2018) describes ASD-related activities and coordination efforts that span multiple federal agencies and departments. The report includes information from 21 federal agencies and departments, addressing ASD research and services according to the required elements outlined in the Autism CARES Act.

The federal departments and agencies included in the Report include:

• Department of Health and Human Services (HHS)
  • Administration for Children and Families (ACF)
  • Administration for Community Living (ACL)
  • Agency for Healthcare Research and Quality (AHRQ)
  • Centers for Disease Control and Prevention (CDC)
  • Centers for Medicare & Medicaid Services (CMS)
  • Food and Drug Administration (FDA)
  • Health Resources and Services Administration (HRSA)
  • Indian Health Service (IHS)
  • National Institutes of Health (NIH)
  • Substance Abuse and Mental Health Services Administration (SAMHSA)
• Department of Education (ED)
• Department of Defense (DoD)
  • Army (DoD-Army)
  • Air Force (DoD-Air Force)
  • Military Health System (MHS)/TRICARE
• Environmental Protection Agency (EPA)
• Department of Housing and Urban Development (HUD)
• Department of Justice (DOJ)
• Department of Labor (DOL)
• National Science Foundation (NSF)
• Social Security Administration (SSA)
• Department of Transportation (DOT)

The following sections summarize major federal programs, activities and accomplishments between FY 2014 and 2018. They include details on coordination across the federal government; ASD surveillance, awareness, and outreach activities; progress investigating the biology and risk factors associated with ASD; and investments in innovative screening, diagnosis, and intervention tools. They also include information on efforts to improve training of ASD practitioners and service providers, to identify and disseminate best practices in education and service provision, and to provide ASD services and supports across the lifespan.

Highlights from the Report

Cross-Agency Coordination

The Interagency Autism Coordinating Committee (IACC) coordinates federal agency activities related to ASD and provides advice to the Secretary of HHS on ASD research and services. The committee also serves as a forum for gathering public input on issues of importance to the autism community to aid the IACC in its advisory function. The Office of Autism Research Coordination (OARC) at NIH provides coordination for IACC member agencies, support for all IACC activities and publications, and serves as a liaison between the IACC and federal agencies, Congress, and the public.

The National Autism Coordinator (NAC) role was created within the Autism CARES Act of 2014 to provide additional support for coordination of federal activities. The duties of the NAC specified in the Autism CARES Act include ensuring that recommendations of the IACC are being implemented by federal agencies as well as ensuring that federal ASD efforts are not unnecessarily duplicative. In October 2016, the NAC convened an Interagency Workgroup (IWG) to provide internal federal coordination of ASD activities. Their first project was to provide input toward the development of the 2017 Report to Congress on Young Adults and Transitioning Youth with ASD, which was required by the Autism CARES Act of 2014. The report was completed and submitted to Congress in August 2017.

The report recommends that increased research efforts, as well as service and resource expansion, should be considered to better serve the population of transitioning youth and young adults with ASD. The IWG was reconvened in June 2018 and re-named the Federal Interagency Workgroup on ASD (FIWA). The goal of FIWA is to address the recommendations of the Report on Young Adults and Transitioning Youth with ASD as well as other important federal ASD issues. The NAC gives updates regarding internal federal implementation activities at meetings of the IACC.

ASD Surveillance, Awareness, and Outreach

The activities in this section address Questions 5 and 7 of the IACC Strategic Plan.

In 2018, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network published autism prevalence data estimating that 1 in 59 children in the U.S. has an autism spectrum disorder. Since 2006, the ADDM Network has been tracking and providing the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S. In 2010, CDC also began a new surveillance program, the Early ADDM Network, to better understand ASD in younger children. Findings from Early ADDM Network provide valuable information about the early identification of children with ASD, age at first comprehensive evaluation, and differences in characteristics, such as intellectual disability, among 4-year-old children with ASD compared to 8-year-old children with ASD in the same communities.

CDC's "Learn the Signs. Act Early." campaign has played an important role nationwide in raising awareness about early developmental milestones. The program has educated parents, health care professionals, and early childhood educators about the importance of monitoring a child’s development, seeking further evaluation when there is a concern, and beginning early intervention services as soon as possible. Several new materials have recently been developed, including books, online training materials, and a milestone tracking mobile application for parents. Since 2011, the CDC has supported five cohorts of Act Early Ambassadors, who work to improve early identification and linkage to services in their state during their tenure.

ED provides training for parents of children with ASD through Parent Training and Information Centers across the nation. Parent Centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide training and assistance to families of children with disabilities, including families of children with autism.

ACF funded a study exploring the feasibility of adapting the Survey of Well-Being of Young Children, a first-line screening instrument, for use on Native American reservations. The study assessed the cultural sensitivity of each individual item in the screening instrument; this was the first time a developmental and behavioral screening instrument had been tested or culturally adapted to fit the needs of young Native American children. The results of this feasibility study were published in 2015, and additional information and resources from the study are available online.

FDA recently held a Patient-Focused Drug Development meeting to hear perspectives from individuals with autism, caregivers, and other patient representatives on the most significant health effects and currently available therapies for autism. A "Voice of the Patient" report summarized the input provided by patients and patient representatives at this meeting.

Investigating the Biology and Risk Factors Associated with ASD

The activities in this section address Questions 2 and 3 of the IACC Strategic Plan.

The CDC supports the Study to Explore Early Development (SEED) program, which is the largest study in the United States dedicated to identifying factors that put children at risk for autism (including genes, health conditions, and environmental exposures). Between 2007 and 2016, SEED enrolled more than 6,000 children, aged 2 through 5 years, and their families in the first two phases of data collection (SEED 1 and SEED 2). The third phase of the program, SEED 3, was funded in 2016, and enrollment and data collection are ongoing. CDC began publishing findings from SEED data in 2014, providing valuable information about the spectrum of behaviors and characteristics of children with ASD and contribute to understanding risk factors.

DoD-Army’s Autism Research Program (ARP) aims to improve the lives of individuals with ASD now by promoting innovative research that advances the understanding of ASD and leads to improved outcomes. Environmental exposures and their probable effects on the development of ASD have comprised one of the focus areas of the ARP through the funding years.

DoD-AF funded a collaborative research project at the Nationwide Children’s Hospital that expanded an ASD data bank for clinical and genetics research. Results from this project include linkages between ASD and genes involved in immune function and cholesterol metabolism.

EPA has collaborated with the National Institute of Environmental Health Sciences (NIEHS) to establish the Center for Children’s Environmental Health (CCEH) at the University of California, Davis. Research at this center focuses on understanding environmental risk factors that may contribute to a person’s susceptibility to neurodevel-opmental disorders such as autism. Recent findings have shed light on the influence of exposures such as air pollution and pesticides on metabolic, immune, and epigenetic risks for autism diagnosis.

In 2018, NIH’s Autism Centers of Excellence (ACE) comprised 9 research centers and networks at major research institutions and universities across the country. ACE researchers are actively working to identify the causes and early signs of ASD, and to develop new and improved treatments. NIH is also accelerating the pace of ASD research discoveries through large-scale, unprecedented resource and data-sharing initiatives. Most autism researchers whose projects involve human subjects have now made data sharing with the NIH National Database for Autism Research (NDAR) part of their proposed research. In addition, other private and public autism organizations are now linked with NDAR, meaning that de-identified data from more than 115,000 consenting research participants are available across more than 400 clinical, imaging, and genomic instruments for secondary analysis by other qualified researchers.

Innovative Screening, Diagnosis, and Intervention Investments

The activities in this section address Questions 1 and 4 of the IACC Strategic Plan.

Since 2014, AHRQ has published and/or updated three systematic reviews evaluating the comparative effectiveness and safety of medical therapies, behavioral interventions, and interventions targeting sensory challenges in children with ASD.

HRSA established two national networks, the Autism Intervention Research Network on Physical Health (AIR-P) and the Autism Intervention Research Network on Behavioral Health (AIR-B) that are allowing researchers to gather data from different sites in order to identify promising treatments and interventions for autism. From FY 2014-2018, AIR-P had 26 active studies, published two empirically based guidelines for the management of anxiety and treatment of irritability and problem behaviors, and developed 11 toolkits for parents and providers. Similarly, the AIR-B Network has completed six studies and has two randomized controlled trials (RCTs) in progress. The Network has also developed three tools and one practical guideline for facilitating more successful transitions within the daily routine for children with ASD.

NIH supports several ongoing efforts to improve methods for ASD screening and diagnosis. The National Institute of Mental Health (NIMH) launched a three-component initiative addressing services research for ASD across the lifespan. One component funded several projects focused on improving tools for early identification of ASD in children. Investigators funded through the Autism Centers of Excellence program are investigating infant social interactions to identify signs of ASD in early infancy, evaluating if early developmental screening lowers the average age of ASD diagnosis and leads to earlier interventions and improved outcomes.

Additionally, the NIH, together with the Foundation for the NIH and the Simons Foundation Autism Research Initiative, funded a four-year, multisite project to identify biomarkers and outcome measures of ASD. The project will test several electroencephalogram (EEG), eye tracking and lab-based measures to determine if they can be used to identify subtypes of ASD, or serve as early indicators of treatment response, and improve clinical research tools for studying ASD.

NSF research awards relevant to ASD fall under a portfolio that emphasizes neuroscience, cognitive sciences, and education and learning research. The agency has funded a range of ASD-relevant research, including innovative interventions and technology-driven tools to identify ASD symptoms.

High-Quality Training of ASD Practitioners and Service Providers

The activities in this section address Question 5 of the IACC Strategic Plan.

ACF maintains a web page titled "Autism Awareness and Acceptance in Early Childhood Education, which is focused on providing information on ASD to early child-hood teachers, including fact sheets, helpful tips, advice on finding local resources, and links to multiple relevant websites. The tip sheets, compiled by ACF and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), contain numerous strategies for working with children with ASD, suggested by experts from across the country.

ACL’s Administration on Intellectual and Developmental Disabilities (AIDD) supports the University Centers for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) to fund interdisciplinary training, exemplary services, technical assistance, and information/dissemination activities in community settings.

Under the Autism CARES Act of 2014, HRSA supports two activities that focus on professional and community training of health professionals in ASD diagnosis and treatment: the Leadership Education in Neurodevelopmental Disabilities (LEND) and Developmental Behavioral Pediatrics (DBP) training programs. The training efforts supported by these programs are effectively reducing barriers to screening and diagnosis by increasing professional capacity and raising awareness about ASD among providers in the community. In FY 2018, there were 52 LEND programs and 10 DBP programs.

Best Practices in Education and Service Provision

The activities in this section address Questions 4 and 5 of the IACC Strategic Plan.

Several AHRQ-funded projects seek to improve various aspects of service provision for individuals with ASD. One group of investigators is testing a family navigator model to reduce racial disparities in screening and diagnosis. AHRQ also supported a conference that aimed to stimulate new and different approaches to the provision of medical care to people with ASD across the lifespan.

DOJ has released guidance on testing accommodations and effective communication to ensure equal opportunities for individuals with disabilities. In collaboration with ED’s Office for Civil Rights and Office of Special Education and Rehabilitative Services, DOJ has also released guidance to address the obligation of public schools to meet the communication needs of students with disabilities.

ED’s Office of Special Education Programs (OSEP) funds the Center on Positive Behavioral Interventions and Supports (PBIS), giving schools capacity-building information and technical assistance for identifying, adapting, and sustaining effective school-wide disciplinary practices and provides resources on how to prevent and address challenging behavior. In addition, ED funds the State Personnel Development Grants program, which authorizes competitive grants to State Educational Agencies to provide in-service professional development to personnel serving children with disabilities, including children with ASD.

ASD Services and Supports Across the Lifespan

The activities in this section address Questions 5 and 6 of the IACC Strategic Plan.

ACL supports Developmental Disabilities Councils (DDCs) in every state and territory. DDC activities support a variety of systems change and capacity building efforts, including projects demonstrating new ideas for enhancing people’s lives, training activities, community education and support, making information available to policy-makers, and working to eliminate barriers to full participation in various life areas such as education, employment, and community living. ACL also manages the Protection & Advocacy (P&A) Agencies program which supports agencies in each state that protect the legal and human rights of people with autism and other developmental disabilities. The P&As empower people by offering information and referral services for legal, administrative, and other remedies to resolve problems and by investigating incidents of abuse and neglect and discrimination based on disability. In addition, ACL funds several projects aimed at improving employment outcomes and community living in transition-age youth and young adults with ASD.

CDC has leveraged the unique infrastructure of SEED to launch the SEED Teen program, a pilot extension designed to better understand the needs of adolescents with ASD. Findings from the SEED Teen pilot will guide future research into this critical transition from childhood to adulthood. Additionally, results from SEED Teen will inform services and treatments for teenagers with autism and other developmental disabilities and their families and add insight into similarities and differences between teens with autism and teens without autism and teen development overall.

CMS has published guidance on their website relevant to individuals with ASD, including information on the implementation of the Community First Choice State Plan Option, a home and community-based benefit package available to states to promote community integration. The Center for Medicaid and CHIP Services has published information on Medicaid home and community based services (HCBS), including guidance. CMS is available to provide technical assistance to states on the various coverage authorities for treatment of ASD, including state plan and HCBS waiver authorities.

DOJ funded a project to build a national resource center to address challenges the justice system faces when it encounters people with disabilities in the areas of law enforcement, courts, and corrections. The Center’s "Pathways to Justice" initiative works to increase capacity of criminal justice professionals to respond to individuals with disabilities by providing training, technical assistance, and education.

DOL has funded apprenticeship and employment partnership programs designed to improve employment outcomes among young adults with ASD. It also awarded Pathways to Careers Demonstration grants to two community colleges. These demonstration grants will support researching, developing, testing, and evaluating innovative approaches to providing comprehensive, coordinated, and integrated inclusive education and career development to youth and young adults with disabilities aged 14-24.

HUD works to strengthen the housing market in order to bolster the economy and protect consumers; meet the need for quality affordable rental homes; utilize housing as a platform for improving quality of life; and build inclusive and sustainable communities free from discrimination. Programs administered by HUD are available to individuals with disabilities, including ASD.

Through the Indian Children’s Program (ICP), IHS provides services to American Indian/Alaska Natives (AI/AN) patients with ASD. ICP recently transitioned to the IHS Telebehavioral Health Center of Excellence (THBCE) program, providing training and support to clinicians regarding behavioral health, family, and social issues facing AI/AN youth diagnosed with neurodevelopmental disorders, including ASD.

SAMHSA oversees the Congressionally-mandated Comprehensive Community Mental Health Services for Children and Their Families Program (short title: Child Mental Health Initiative (CMHI)), which provides funding to develop the infrastructure for a coordinated system of services and supports and to provide services to children with serious emotional disorders. Children and their families served in this program are provided a full system of family-driven services and supports, delivered in home and community-based settings or in the least restrictive environ-ment. From FY 2011 to FY 2015, SAMHSA also funded 127 CMHI grants to support expansion of systems of care.

SSA administers two disability programs, the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program, for individual with disabilities including ASD. SSA has been working with researchers at the A.J. Drexel Autism Institute to produce research on national and state trends for adults with autism who receive Supplemental Security Income.

TRICARE offers physician services, pharmacy coverage, psychosocial treatment, psychological testing, occupational therapy, physical therapy, and speech and language pathology for the treatment of ASD to all eligible TRICARE beneficiaries. The Department has provided coverage for Applied Behavior Analysis (ABA), for family members of active duty service members since 2001.

Summary

The Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities details several ASD research and services activities across the federal government. Since the enactment of the Combating Autism Act in 2006, and its reauthorization under the Autism CARES Act of 2014, federal agencies, in partnership with the community, have made significant strides in addressing many of the pressing needs of individuals and families affected by ASD. In the period covered by this report (FY 2014-2018), federally-funded research and services programs and projects have increased knowledge on the prevalence of ASD in the U.S. population, approaches for early detection and early intervention, the biology and risk factors that contribute to ASD, interventions that can address needs across the lifespan, and educational and adult services programs, including those focusing on employment, housing, and community living. In various ways, these programs and activities are addressing all seven Question areas of the IACC Strategic Plan.

To ensure continuing coordination among federal agencies and between federal and private partner organizations, the IACC will continue to provide strategic guidance and a forum for public input into federal planning efforts, helping federal agencies and members of the public work together toward meeting the needs of the autism community. In addition, the NAC and the FIWA will continue internally coordinating federal efforts to implement advice provided by the IACC and addressing recommendations of reports to Congress related to ASD. While the collaborative efforts of federal and state agencies and community partners have resulted in many research advances and improvements in services, all stakeholders acknowledge the growing needs of the community and the work that remains to be done. Continued collaborative efforts between the public and private sectors will be essential to drive the innovations that will lead to improved identification, interventions, services, and policies that will enhance the lives of people with ASD and their families.

For the full report, please view the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities (FY 2014 - FY 2018) on the IACC website.