Results of the Combating Autism Act Initiative: HRSA’s Efforts to Improve Medical and Behavioral Interventions for ASD Through the MCH Autism Intervention Research Grant Program Department of Health and Human Services Health Resources and Services Administration Maternal and Child Health Bureau 5600 Fishers Lane Rockville, MD 20857 December 2011 Results of the Combating Autism Act Initiative: HRSA’s Efforts to Improve Medical and Behavioral Interventions for ASD Through The MCH Autism Intervention Research Grant Program Authors: Anne Peterson Brittany McGill Alexandra Suchman Claire Wilson November 30, 2011 Submitted by: Submitted to: Insight Policy Research, Inc. Maternal and Child Health Bureau 1901 N. Moore Street 5600 Fishers Lane Suite 601 Rockville, MD 20857 Arlington, VA 22209 Project Director: Project Officer: Claire Wilson LCDR Deidre Washington-Jones U.S. Public Health Service This study was conducted under Contract No. HHSH240200865007C with the Maternal and Child Health Bureau. Suggested Citation: Peterson, A., McGill, B., Suchman, A., Wilson, C. (2011). Results of the Combating Autism Act Initiative: HRSA’s Efforts to Improve Medical and Behavioral Interventions for ASD Through the MCH Autism Intervention Research Grant Program. Prepared by Insight Policy Research Under Contract No. HHSH240200865007C. Rockville, MD: Health Resources and Services Administration, Maternal and Child Health Bureau. ACKNOWLEDGEMENTS This report was prepared by Insight Policy Research, Inc. under Contract No. HHSH240200865007C from the Health Resources and Services Administration’s Maternal and Child Health Bureau. Many people contributed in meaningful ways to this report. First, we express our appreciation to the MCH Autism Intervention Research Program networks for taking the time to speak with us about their experiences in setting up the networks and carrying out the Combating Autism Act Initiative activities. In particular, Dr. Connie Kasari, director of the AIR-B network; Dr. James M. Perrin, director of the AIR-P network; and Dr. Daniel Coury, medical director of the Autism Treatment Network, provided input at key stages of our work, including providing meaningful comments and suggestions on the grantee protocol and the final report. We are indebted to them for their time and candor during the interviews. We also want to thank the seven R40 grantees for their assistance in documenting the methods and products of each of their individual research studies. This report represents a team effort in which many individuals made key contributions in addition to the authors. We would like to recognize the sustained help of LCDR Deidre Washington-Jones, the MCHB Project Officer, who helped to design the study, develop the questions for the grantees, and make useful suggestions for developing the final CAAI reports. We would also like to express our appreciation for the provision of resources and valuable guidance provided by numerous other members of HRSA’s MCHB senior staff, including Stella Yu, chief of the Research and Demonstration Branch; Laura Kavanagh, director of the Division of Research, Training and Education; and Bonnie Strickland, director of the Division of Services for Children with Special Health Needs. Additional persons in MCHB helped to ensure that the study team received the necessary data, including Hae Young Park and Robyn Schulhof, and we gratefully acknowledge their assistance. The authors also would like to thank Dar Haddix, who helped to edit this report, as well as numerous individuals from Insight Policy Research who helped to transcribe the interviews and compile the information needed for this report, particularly David Newman, Bryan Johnson, and Betsy Thorn. TABLE OF CONTENTS EXECUTIVE SUMMARY............................................................................................................................................i CHAPTER I: INTRODUCTION ..................................................................................................................................1 A. PASSAGE OF THE COMBATING AUTISM ACT OF 2006 ....................................................................................1 B. HEALTH RESOURCES AND SERVICES ADMINISTRATION’S COMBATING AUTISM ACT INITIATIVE...................1 C. MCHB’S CAAI AUTISM INTERVENTION RESEARCH PROGRAMS ......................................................................2 D. THE MCHB EFFECT: SYNERGIES AND SYSTEMS CHANGE................................................................................6 E. ORGANIZATION OF THIS REPORT....................................................................................................................7 CHAPTER II: BACKGROUND ON AUTISM SPECTRUM DISORDERS ..........................................................................8 A. PREVALENCE RATES.........................................................................................................................................8 B. NEED FOR EARLY SCREENING AND DIAGNOSIS...............................................................................................8 C. NEED FOR EFFECTIVE INTERVENTION .............................................................................................................9 D. NEED FOR A COMPREHENSIVE, COORDINATED SYSTEM OF CARE ...............................................................10 CHAPTER III: OVERVIEW OF THE STUDY .............................................................................................................. 12 A. STUDY DESIGN...............................................................................................................................................12 B. DATA COLLECTION.........................................................................................................................................13 C. DATA ANALYSIS .............................................................................................................................................15 D. STUDY CONSIDERATIONS ..............................................................................................................................15 CHAPTER IV: IMPLEMENTING AND MAINTAINING SUSTAINABLE MCH AUTISM INTERVENTION RESEARCH NETWORKS .................................................................................................................................... 17 A. RESEARCH NETWORK START-UP ACTIVITIES .................................................................................................17 B. ONGOING MANAGEMENT OF RESEARCH NETWORK ACTIVITIES..................................................................18 C. RESEARCH NETWORK IMPLEMENTATION CHALLENGES ...............................................................................19 D. SUSTAINABILITY OF RESEARCH NETWORKS OVER TIME ...............................................................................20 CHAPTER V: NEW RESEARCH CONDUCTED ON EVIDENCE-BASED ASD INTERVENTIONS...................................... 21 A. DESCRIPTION OF THE CAAI RESEARCH STUDIES............................................................................................21 B. RESEARCH ADDRESSING BARRIERS TO CARE AMONG UNDERSERVED AND UNDERREPRESENTED POPULATIONS ...............................................................................................................................................31 C. ENSURING FAMILY INVOLVEMENT AND FAMILY-CENTERED CARE...............................................................36 D. CAAI RESEARCH PRODUCTS...........................................................................................................................39 CHAPTER VI: DEVELOPMENT OF MEDICAL AND BEHAVIORAL TREATMENT GUIDELINES..................................... 46 A. CAAI GUIDELINE PRODUCTS..........................................................................................................................46 B. DESCRIPTION OF THE CAAI AUTISM INTERVENTION GUIDELINES ................................................................46 C. DISSEMINATION OF THE CAAI AUTISM INTERVENTION GUIDELINES ...........................................................53 CHAPTER VII: DEVELOPMENT OF ASSESSMENT TOOLS AND TOOLKITS............................................................... 54 A. CAAI TOOL PRODUCTS...................................................................................................................................54 B. DESCRIPTION OF THE CAAI AUTISM INTERVENTION TOOLS .........................................................................55 C. DISSEMINATION OF THE CAAI AUTISM INTERVENTION TOOLS ....................................................................61 CHAPTER VIII: INCREASING AWARENESS OF ASD INTERVENTION RESEARCH, GUIDELINES, AND VALIDATED TOOLS........................................................................................................................................... 62 A. TRAINING AND COMMUNITY OUTREACH EVENTS........................................................................................62 B. ELECTRONIC DISSEMINATION OF INFORMATION .........................................................................................66 C. STATE-LEVEL PARTNERSHIPS.........................................................................................................................69 CHAPTER IX: CONCLUSION .................................................................................................................................. 71 REFERENCES........................................................................................................................................................