Combating Autism Act Initiative Building Partnerships for Effective Change National Early Childhood Meeting December 9, 2009 Bonnie Strickland, Ph.D. U.S. Department of Health and Human Services Health Resources and Services Administration Maternal and Child Health Bureau

Combating Autism Act History  S. 843 introduced April 19, 2005 by Sens. Santorum (R-PA) and Dodd (D-CT)  H.R introduced in House by Mary Bono (R- CA) May 18, 2005  Passed Senate Aug. 3; then again Dec. 7, 2006  Passed House Dec. 6, 2006  Signed into law PL Dec. 19, 2006  Amends PHS Act to “combat autism through research, screening, intervention & education”

Combating Autism Act of 2006 The Combating Autism Act of 2006 authorizes programs to combat autism through research, screening, intervention and education.

Combating Autism Act Initiative The goal of the Combating Autism Act Initiative (CAAI) is to enable all infants, children, and adolescents who have, or are at risk for developing, autism spectrum disorders (ASD) and other developmental disabilities to reach their full potential.

Combating Autism Act Initiative CAAI will achieve this goal by developing a system of services that includes screening children early for possible ASD and other DD; conducting early, interdisciplinary, evaluations to confirm or rule out ASD and other DD; and, if a diagnosis is confirmed, providing evidence-based, early interventions.

Core Systems Outcomes  Facilitate the development of systems of services through: 1. Partnerships with families and consumers, 2. Access to care through the medical home, 3. Adequate financing, 4. Early and continuous screening, 5. Organization of services for easy use, 6. Transition to adult health care, work, and independence.

Combating Autism Act Initiative  $114.5 million for NIH research into causes, diagnosis, early detection, intervention and treatment  $16.5 million for CDC’s Disabilities Surveillance and Research Program  $37 million for HRSA to increase awareness, promote evidence based interventions, reduce barriers to screening & diagnosis, and train professionals to diagnose and provide evidence based interventions

Combating Autism Act Initiative Under this authority, HRSA/MCHB has developed the Combating Autism Act Initiative (CAAI), a $37 million initiative to address ASD and other developmental disabilities by:  Increasing awareness;  Reducing barriers to screening and diagnosis;  Supporting research on evidence-based interventions for children and adolescents with ASD or other developmental disabilities;  Promoting evidence-based guideline development for interventions; and  Training professionals to utilize valid screening tools to diagnose and to provide evidence base interventions.

Combating Autism Act Initiative Funding Summary: $34 Million Available for Project Funding ________________________________________ $20 Million LEND/Developmental Behavioral Pediatrics (DBP) Training $ 6 Million New LEND and LEND Expansions $ 6 Million Autism Research Networks $ 2+Million Info/Education/Tool Dissemination (State Demonstration, Evaluation)

Combating Autism Act Initiative Under the CAAI, the Maternal and Child Health Bureau is initiating programs in four areas:  Combating Autism Training Programs;  Autism Intervention Research Network Program;  Combating Autism State Demonstration and Policy Programs; and  Combating Autism National Evaluation.

Combating Autism Training Program  Expansions of 18 existing Leadership Education in Neurodevelopmental Disabilities (LEND) training programs;  Four new LEND programs;  Expansions to Developmental Behavioral Pediatrics training programs; and  A National Combating Autism Interdisciplinary Training Resource Center cooperative agreement.

Combating Autism Training Programs Leadership Education in Neurodevelopmental & Related Disorders Training Program (*=new LEND) OrganizationCityStateAmount University of Alabama at BirminghamBirminghamAL$200,000 University of Arkansas for Medical Sciences*Little RockAR$550,000 Children’s Hospital of Los Angeles-School of Physical TherapyLos AngelesCA$200,000 University of Colorado Denver*AuroraCO$550,000 University of Connecticut Health Center*FarmingtonCT$550,000 Children’s Research InstituteWashingtonDC$200,000 University of Illinois at Chicago*ChicagoIL$549,999 Indiana University, School of MedicineIndianapolisIN$200,000 University of Kansas Medical Center Research InstituteKansas CityKS$195,155 Children’s HospitalBostonMA$200,000

Combating Autism Training Programs University of NebraskaOmahaNE $200,000 Albert Einstein College of MedicineHanoverNH $200,000 Albert Einstein College of MedicineBronxNY $200,000 University of RochesterRochesterNY $200,000 University of North Carolina at Chapel HillChapel HillNC $200,000 The Children’s Hospital of PhiladelphiaPhiladelphiaPA $200,000 University of Tennessee at KnoxvilleMemphisTN $200,000 Vanderbilt University Medical CenterNashvilleTN $200,000 University of UtahSalt Lake CityUT $200,000 University of VermontBurlingtonVT $200,000 University of WashingtonSeattleWA $200,000 West Virginia UniversityMorgantownWV $199,997 TOTAL:$5,795,151

Combating Autism Developmental Behavioral Pediatrics Training Grants OrganizationCityStateAmount Albert Einstein College of MedicineNew YorkNY $192,467 Leland Stanford Junior University*Palo AltoCA $142,467 Boston UniversityBostonMA $192,467 Children’s Hospital BostonBostonMA $192,467 Case Western Reserve UniversityClevelandOH $192,467 Rhode Island Hospital*ProvidenceRI $142,467 University of Arkansas for Medical Sciences*Little RockAR $111,143 University of Oklahoma Health Sciences Center*Oklahoma CityOK $142,467 University of Pennsylvania School of MedicinePhiladelphiaPA $221,943 Yale UniversityNew HavenCT $192,467 TOTAL:$1,722,822

Combating Autism Training Programs The Association of University Centers on Disabilities (AUCD) in Silver Spring, Md., will receive a grant for the National Interdisciplinary Training Resource Center. Through this grant AUCD will:  provide technical assistance;  build and sustain partnerships with service systems already serving children with ASD and other DD;  translate research into evidence-based practice; and  utilize existing and develop new data systems to capture and report project outcomes.

Autism Intervention Research (AIR) Networks Program The purpose of the AIR Networks is to establish and maintain a network infrastructure, designed to be a platform from which to conduct research on evidence based practice for interventions to improve the health of children and adolescents with ASD and other DD.

Autism Intervention Research Networks Program The AIR Networks will:  Conduct research on evidence based practices;  Develop evidenced based guidelines and validate tools for interventions to improve health; and  Disseminate information on research, guidelines, and tools to health professionals and the public, especially families impacted by ASD and other DD.

Autism Intervention Research Networks Program  The general Hospital Corporation of Boston will receive an award of $4 million to conduct research on interventions to improve the physical health and well- being of children and adolescents with ASD and other developmental disabilities.  The Regents of the University of California at Los Angeles will receive $2 million to conduct research on the behavioral, mental, social, and/or cognitive health and well-being of children and adolescents with ASD and other developmental disabilities.

Combating Autism State Demonstration and Policy Programs  State Autism Demonstration grants will implement State autism plans and develop models for how to develop systems of services for children with ASD and other developmental disabilities.  A State Public Health Coordinating Center will coordinate with the State Autism Demonstration grants and will develop and implement a strategy for defining, supporting, and monitoring the role of State public health agencies in assuring that children and youth with ASD receive early and appropriate identification, diagnosis, and intervention.

Combating Autism State Demonstration and Policy Programs State Implementation Grants for Improving Services for Children and Youth with ASD OrganizationCityStateAmount Alaska Department of Health and Social ServicesAnchorageAK $300,000 The Hope SchoolSpringfieldIL $300,000 The Curators of the University of MissouriColumbiaMO $397,957 Utah Department of HealthSalt Lake CityUT $300,000 Washington Department of HealthOlympiaWA $300,000 Wisconsin Department of Health and Family Servs.MadisonWI $300,000 TOTAL:$1,797,957

Combating Autism State Demonstration and Policy Programs The State Association of Maternal and Child Health Programs (AMCHP) will receive a $250,000 award to develop the State Public Health Coordinating Center for Autism.

Combating Autism National Evaluation Information from this evaluation study will contribute to the HHS Secretary’s Report to Congress on progress related to ASD and other developmental disabilities as required by the “Combating Autism Act of 2006.”

Partnerships A working group has been established with CDC to look at areas of collaboration and cooperation between HRSA and CDC on autism related activities, some examples are:  Collaborate on Act Early Regional Summits;  Joint site visits for States with HRSA/CDC grants;  Investigate using HRSA State infrastructure to drill down to the State and local levels for public information campaigns;

Partnerships (cont’d)  Work together to improve knowledge of physician- in-training and other health care provider knowledge of child development and early warning signs of autism through work with Developmental-Behavioral Fellowship grantees;  Work together on evaluation components for both agency’s activities; and  Create a map of overlap for activities related to autism activities for both agencies.

Combating Autism Act Initiative Bonnie Strickland, Ph.D. Director, Division of Services for Children with Special Health Care Needs Maternal and Child Health Bureau Health Resources and Services Administration 5600 Fishers Lane, Room Rockville, MD Telephone: