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

The Autism Collaboration, Combating Autism Accountability, Research, Combating Autism Act of 2006. Reauthorization Act 2011 Education and Supports (CARES)Act 2014 • President George W. Bush signed the original law in 2006 Centers for Disease Control and Health Resources and Services National Institutes of Health (NIH) Prevention (CDC) Administration (HRSA) • Office of Autism Research • The Autism and Developmental • Autism Research Networks Program Coordination (OARC) Disabilities Monitoring Network • Autism Single Investigator Innovation • Autism Centers of Excellence (ACEs) (ADDM) Program (Autism SIIP) • ASD investigator-initiated and • Centers for Autism and • The R41 Autism Field–Initiated targeted research Developmental Disabilities Research Intervention Research (Autism FIRST) • Support for IACC publications and and Epidemiology (CADDRE) • The R41 Autism Secondary Data activities • The Study to Explore Early Analysis Research (Autism SDAR) Development (SEED) • Leadership Education in • The National Health Interview Survey Neurodevelopmental and Related (NHIS) Disabilities (LEND) Training Program • Learn the Signs. Act Early. (LTSAE) • 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 ü Increased appropriations to FY19 level ü Requires report to Congress on the health and well-being of individuals on the . ü Directs NIH to conduct research targeted at improving outcomes and detection for persons with autism of all ages. ü Directs HRSA to prioritize grants for developmental-behavioral pediatricians in medically- underserved areas. ü 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 • [email protected] • 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. 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 $162 $169 $258 $287 $238 $262 $253 $258 $278 $302 $315 $330 $3,114 Funding

HRSA $20 $36 $42 $48 $48 $47 $45 $47 $47 $47 $47 $49 $523

CDC $15 $16 $20 $22 $21 $23 $22 $23 $23 $23 $23 $23 $254

$132 $159 NIH $127 $117 (+ $64 (+ $58 $169 $192 $186 $188 $208 $232 $245 $260 $2,337 ARRA) ARRA)

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