Report to Congress
on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2014 - FY 2018
Introduction
Autism Spectrum Disorder
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by persistent impairments in social communication and social interaction, as well as restricted, repetitive, and stereotyped patterns of behavior, leading to difficulty in developing, maintaining, and understanding relationships with others. Recent research suggests that, using brain imaging techniques, differences in development indicative of ASD may be observed as early as 6 months of age. However, overt signs and traits of ASD usually emerge between 1 and 2 years of age. Because ASD is a lifelong condition and the combination and severity of characteristics can differ greatly from one individual to another, its associated challenges and support needs can range widely from modest to very extensive. Services and supports are available to help maximize health and wellbeing among children and adults on the autism spectrum, but the needs for earlier identification, improved interventions, and broadly available access to services remain a challenge. ASD continues to be a top national health priority, engaging the collaborative efforts of federal agencies, academic institutions, and private organizations to advance research and improve services and support systems. This report describes the efforts supported by federal departments and agencies to address research, health, education, and other related service and support needs that will improve the quality of life among children, adolescents, and adults on the autism spectrum.
Legislative Background
The Combating Autism Act (CAA) of 2006 (P.L. 109-416) was enacted on December 19, 2006 to address public concerns about ASD and to strengthen federal efforts around this issue. The CAA amended the Public Health Service Act to authorize the expansion and enhancement of federal activities related to ASD research, surveillance, early detection, prevention, treatment, education, and disability programs. The law also reconstituted the Interagency Autism Coordinating Committee (IACC), originally created under the Children's Health Act of 2000, as a federal advisory body with specific membership requirements and a charge to provide federal coordination of ASD-related activities, as well as a venue for public input on issues related to ASD. The CAA authorized $945 million in federal funds to support ASD-related federal efforts through September 30, 2011. Additionally, the CAA required the Department of Health and Human Services (HHS), in conjunction with the Department of Education (ED), to submit, no later than 4 years after the enactment of the CAA, a Report to Congress on the progress made in implementing provisions of the CAA. The Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY 2006 - FY 2009) was submitted in accordance with the requirement.
On September 30, 2011, Congress enacted the Combating Autism Reauthorization Act (CARA) of 2011 (P.L. 112-32), which extended the authorizations of the CAA past its sunset date of September 30, 2011 to September 30, 2014. The CARA also authorized $693 million in federal funds to support ASD-related federal efforts through 2014. The CARA again required HHS, in conjunction with ED, to submit a Report to Congress on the progress made in implementing provisions of the CARA, no later than 2 years after the law's enactment. This report, the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012), was submitted in accordance with this requirement.
The Autism CARES Act
The Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act) of 2014 (P.L. 113-157) was signed into law on August 8, 2014. The Autism CARES Act reauthorized the ASD-related activities that began in 2006 under the CAA, and continued in 2011 under CARA, thus sustaining support for these activities related to ASD research and services through 2019. The Autism CARES Act states, "Not later than 4 years after August 8, 2014, the Secretary, in coordination with the Secretary of Education and the Secretary of Defense, shall prepare and submit to the Health, Education, Labor, and Pensions Committee of the Senate and the Energy and Commerce Committee of the House of Representatives, and make publicly available, including through posting on the Internet Web site of the Department of Health and Human Services, a progress report on activities related to autism spectrum disorder and other developmental disabilities." Additionally, the Autism CARES Act required the preparation of a second report "concerning young adults with autism spectrum disorder and the challenges related to the transition from existing school-based services to those services available during adulthood." This report, the 2017 Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder, was submitted in accordance with this second requirement. The Autism CARES Act also authorized $1.3 billion in federal funds to support ASD-related efforts through 2019.
Provisions of the Autism CARES Act of 2014
- Continues efforts in autism surveillance, research, education/awareness, early detection, and intervention, including efforts to increase cultural competency and provider training across several federal departments/agencies.
- Reauthorizes the Interagency Autism Coordinating Committee to coordinate federal agencies in ASD-related efforts, serve as a forum for public input, and provide advice to the HHS Secretary on matters pertaining to ASD.
- Requires the appointment of a National Autism Coordinator within HHS to ensure implementation and accountability of activities detailed in the Autism CARES Act.
- Requires a report to Congress on federal activities related to youth and young adults with ASD and the challenges they face regarding the transition from school-based to adult service systems.
- Requires a Report to Congress on progress made in implementing the provisions of the Autism CARES Act.
- Authorizes $1.3 billion in appropriations for federal ASD-related efforts through September 30, 2019.
Requirements for the Autism CARES Act Report to Congress
As with the CAA and CARA, the Autism CARES Act requires a report on federal ASD activities to be submitted to Congress. The following elements are required for this report:
- "A description of the progress made in implementing the provisions of the Autism CARES Act of 2014"
- "A description of the amounts expended on the implementation of the amendments made by the Autism CARES Act of 2014"
- "Information on the incidence and prevalence of autism spectrum disorder, including available information on the prevalence of autism spectrum disorder among children and adults, and identification of any changes over time with respect to the incidence and prevalence of autism spectrum disorder"
- "Information on the average age of diagnosis for children with autism spectrum disorder and other disabilities, including how that age may have changed over the 4-year period beginning on August 8, 2014, and, as appropriate, how this age varies across population subgroups"
- "Information on the average age for intervention for individuals diagnosed with autism spectrum disorder and other developmental disabilities, including how that age may have changed over the 4-year period beginning on August 8, 2014, and, as appropriate, how this age varies across population subgroups"
- "Information on the average time between initial screening and then diagnosis or rule out for individuals with autism spectrum disorder or other developmental disabilities, as well as information on the average time between diagnosis and evidence-based intervention for individuals with autism spectrum disorder or other developmental disabilities and, as appropriate, on how such average time varies across population subgroups"
- "Information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by severity level as practicable, and other developmental disabilities and how the age of the child or other factors, such as demographic characteristics, may affect such effectiveness"
- "Information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities"
- "A description of the actions taken to implement and the progress made on implementation of the strategic plan developed by the Interagency Autism Coordinating Committee"
Report to Congress (FY 2014 – FY 2018)
This 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 updates from the Interagency Autism Coordinating Committee, Departments of Defense and Education, and agencies within the Department of Health and Human Services, as required by the Autism CARES Act. It also contains updates from the Environmental Protection Agency, National Science Foundation, Social Security Administration, and the Departments of Housing and Urban Development, Justice, Labor, and Transportation, which also conduct activities related to autism or individuals with disabilities. The report covers all elements required in the Autism CARES Act for the period of fiscal years 2014-2017. Some information regarding federal programs and projects in FY 2018 is included in this report, but it should be noted that the information pertaining to FY 2018 may not be complete, as FY 2018 was still underway as this report was being prepared.
