Rylin Rodgers, AUCD Angela Lello, Autism Speaks Autism CARES Act Rylin Rodgers, AUCD Angela Lello, Autism Speaks

History Combating Autism Act of 2006. President George W. Bush signed the original law in 2006 Combating Autism Reauthorization Act 2011 The Autism Collaboration, Accountability, Research, Education and Supports (CARES)Act 2014

National Institutes of Health (NIH) Office of Autism Research Coordination (OARC) Autism Centers of Excellence (ACEs) ASD investigator-initiated and targeted research Support for IACC publications and activities Centers for Disease Control and Prevention (CDC) The Autism and Developmental Disabilities Monitoring Network (ADDM) Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) The Study to Explore Early Development (SEED) The National Health Interview Survey (NHIS) Learn the Signs. Act Early. (LTSAE) Health Resources and Services Administration (HRSA) Autism Research Networks Program Autism Single Investigator Innovation Program (Autism SIIP) The R41 Autism Field–Initiated Intervention Research (Autism FIRST) The R41 Autism Secondary Data Analysis Research (Autism SDAR) Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Program Developmental Behavioral Pediatrics (DBP) Training Program Interdisciplinary Training Resource Center (ITAC) State Systems Program State Public Health Autism Resource Center (SPHARC) Department of Health and Human Services National Autism Coordinator Interagency Autism Coordinating Committee (IACC)

Autism CARES 2019 Bills to reauthorize the Act were introduced on February 7th (HR. 1058, S. 427). Must be reauthorized or sunsets September 30, 2019 Notable changes include Increased appropriations to FY19 level Requires report to Congress on the health and well-being of individuals on the autism spectrum. Directs NIH to conduct research targeted at improving outcomes and detection for persons with autism of all ages. Directs HRSA to prioritize grants for developmental-behavioral pediatricians in medically- underserved areas. Amends sections of the Public Health Service Act (PHSA) to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages, not just children. Currently seeking co-sponsors in House and Senate House Energy and Commence Subcommittee on Health Hearing June 25, 2019

Contact US www.aucd.org Rylin Rodgers rrodgers@aucd.og 240 821 9381 Twitter @aucdnews @AndyAUCD @Tuesdaywithliz @RylinAUCD

Overview of Autism CARES Act of 2019 (S.427/H.R.1058) On February 7, 2019, the Autism CARES Act of 2019 was introduced in Congress by Representative Chris Smith and Senator Bob Menendez of New Jersey. The legislation continues programs of the Autism CARES Act of 2014, provisions of which will expire on September 30, 2019. Specifically, the Autism CARES Act of 2019: Reauthorizes developmental disabilities surveillance and research at the Centers for Disease Control and Prevention $23.1 million for each of fiscal years 2020 through 2024 Authorizes autism education, early detection, and intervention programs at the Health Resources and Services Administration $50.599 million for each of fiscal years 2020 through 2024 Authorizes research at the National Institutes of Health “such sums as may be necessary” for each of fiscal years 2020 through 2024 Authorizes the Interagency Autism Coordinating Committee (IACC); Requires the Secretary of Health and Human Services (HHS) to prepare a report on the health and well-being of individuals with autism. Continues the National Autism Spectrum Disorder Initiative, which requires the Secretary of HHS to designate an existing official within HHS to oversee national autism spectrum disorder research, services, and support activities. The duties of this official include implementing autism spectrum disorder activities, taking into account the strategic plan developed by the IACC. CDC = ADDM HRSA = Developmental Behavioral Pediatric Fellowships; Leadership Education in Neurodevelopmental Disabilities (LEND); Autism Intervention Research Networks NIH = Broad portfolio of autism research; Autism Centers of Excellence. “Such sums as may be necessary” is a placeholder. All authorized amounts are the greater of the largest historic authorization or appropriation. IACC = consists of the following agencies and departments: Department of Health and Human Services, including Administration for Children and Families, Administration for Community Living, Agency for Healthcare Research and Quality, Assistant Secretary for Planning and Evaluation, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Health Resources and Services Administration, Indian Health Service, National Institutes of Health, Substance Abuse and Mental Health Services Administration; Department of Education; Department of Defense; Department of Transportation; Environmental Protection Agency; and Social Security Administration. CARES 2019 adds Department of Justice; Department of Labor; and Department of Housing and Urban Development. Dr. Ann Wagner was appointed National Autism Coordinator on February 28, 2018. She is Chief of the Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branch in the Division of Translational Research at the National Institute of Mental Health (NIMH). In that role she oversees the NIMH Autism Research Program.

Federal Autism Appropriations Total federal autism funding appropriated since 2007 has exceeded $3.1 billion. Funding amounts and activities are authorized via Autism CARES Funding levels are appropriated via annual Labor-Health and Human Services and Related Agencies appropriations bills 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 Total Total Autism Funding $162 $169 $258 $287 $238 $262 $253 $278 $302 $315 $330 $3,114 HRSA $20 $36 $42 $48 $47 $45 $49 $523 CDC $15 $16 $22 $21 $23 $254 NIH $127 $117 $132 (+ $64 ARRA) $159 (+ $58 $192 $186 $188 $208 $232 $245 $260 $2,337 Authorization = allowing the check to be written Appropriations = withdrawing the money/cashing the check Increasing authorized amounts via CARES is not politically feasible (Senate = GOP)