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Results of the Combating Autism Act Initiative:

HRSA’s Efforts to Improve ASD Service Delivery

Through DBP Training Program Grants

December 2011

Department of Health and Human Services Health Resources and Services Administration

Maternal and Child Health Bureau

5600 Fishers Lane

Rockville, MD 20857

Results of the Combating Autism Act Initiative:HRSA’s Efforts to Improve ASD Service Delivery Through

DBP Training Program Grants

Authors:Brittany McGillBryan JohnsonClaire Wilson

November 30, 2011

Submitted by:Insight Policy Research, Inc.1901 N. Moore StreetSuite 601Arlington, VA 22209

Project Director:Claire Wilson

Submitted to:Maternal and Child Health Bureau5600 Fishers LaneRockville, MD 20857

Project Officer:LCDR Deidre Washington-JonesU.S. Public Health Service

This study was conducted under Contract No. HHSH240200865007C with the Maternal and Child Health Bureau.

Suggested Citation:McGill, B., Johnson, B., & Wilson, C. (2011). Results of the Combating Autism Act Initiative: HRSA’s Efforts toImprove ASD Service Delivery Through DBP Training Program Grants. Prepared by Insight Policy Research underContract No. HHSH240200865007C. Rockville, MD: Health Resources and Services Administration, Maternal andChild Health Bureau.

ACKNOWLEDGEMENTS

This report was prepared by Insight Policy Research, Inc. under Contract No. HHSH240200865007Cfrom the Health Resources and Services Administration’s Maternal and Child Health Bureau. Manypeople contributed in meaningful ways to this report. First, we express our appreciation to theDevelopmental-Behavioral Pediatrics training programs for taking the time to speak with us about theirexperiences carrying out the Combating Autism Act Initiative activities. In particular, we would like tothank Drs. Marilyn Augustyn and Elizabeth Caronna, current and former DBP program directors atBoston Medical Center; Dr. Nathan Blum, DBP program director at the Children’s Hospital ofPhiladelphia; Dr. Leonard Rappaport, DBP program director at the Children’s Hospital of Boston; Dr.Nancy Roizen, DBP program director at Case Western Reserve University; Dr. Ruth Stein, DBP programdirector at the Montefiore Medical Center; and Dr. Carol Weitzman, DBP program director at YaleUniversity. We are indebted to them for their time and candor during the interviews. We also wish toacknowledge AUCD for their work in developing the CAAI reporting module in NIRS, and overseeingthe annual collection of quantitative data from the DBP grantees. George Jesion gave generously of histime during the planning stages of this study. Maggie Nygren worked tirelessly to ensure that theinstrument was ready on time, despite tight deadlines. Katy Beggs and Crystal Pariseau providedinvaluable support before, during, and after the annual grantee meetings, and made sure that we achieveda 100-percent response rate for the NIRS module every year of the grant.

We would also like to recognize several people within MCHB who provided critical support for thisstudy. LCDR Deidre Washington, the MCHB Project Officer, provided valuable leadership andinsightful suggestions throughout the design and implementation of this study. We also greatly benefittedfrom the expertise of Laura Kavanagh, director of the Division of Research, Training and Education, andBonnie Strickland, director of the Division of Services for Children with Special Health Needs. NanettePepper-Callahan made herself available throughout the study to provide grant documents, answerquestions, and review project deliverables, and we gratefully acknowledge her assistance.

The authors also would like to thank Dar Haddix, who helped to edit this report, as well as numerousindividuals from Insight Policy Research who helped to transcribe the interviews and compile theinformation needed for this report, particularly Anne Peterson and Alex Suchman.

TABLE OF CONTENTS

EXECUTIVE SUMMARY............................................................................................................................................ i

CHAPTER I: INTRODUCTION .................................................................................................................................. 1

A. PASSAGE OF THE COMBATING AUTISM ACT OF 2006......................................................................................1B. HEALTH RESOURCES AND SERVICES ADMINISTRATION’S COMBATING AUTISM ACT INITIATIVE....................1C. OVERVIEW OF THE DBP TRAINING PROGRAM.................................................................................................2D. DBP AND THE CAAI SUPPLEMENTAL GRANTS ..................................................................................................3E. ORGANIZATION OF THIS REPORT .....................................................................................................................4

CHAPTER II: BACKGROUND ON AUTISM SPECTRUM DISORDERS .......................................................................... 5

A. PREVALENCE RATES..........................................................................................................................................5B. NEED FOR EARLY SCREENING AND DIAGNOSIS ................................................................................................5C. NEED FOR EFFECTIVE INTERVENTION ..............................................................................................................6D. NEED FOR COMPREHENSIVE, COORDINATED SYSTEMS OF CARE ....................................................................7

CHAPTER III: OVERVIEW OF THE STUDY ................................................................................................................ 9

A. STUDY GOALS ...................................................................................................................................................9B. DEVELOPMENT OF THE LOGIC MODEL AND RESEARCH QUESTIONS ...............................................................9C. DATA COLLECTION..........................................................................................................................................10D. ANALYSIS STRATEGY .......................................................................................................................................14E. STUDY LIMITATIONS AND CONSIDERATIONS .................................................................................................14

CHAPTER IV: TRAINING PROFESSIONALS TO SCREEN FOR, DIAGNOSE, AND TREAT ASD ..................................... 16

A. INCREASED NUMBER OF PROFESSIONALS IN THE PIPELINE...........................................................................16B. ENHANCED FOCUS ON AUTISM IN THE DIDACTIC AND CLINICAL TRAINING ................................................19C. ENHANCED ADVOCACY, COUNSELING, AND COORDINATION OF CARE.........................................................23

CHAPTER V: ENHANCING RESEARCH ON ASD AND TRANSLATING RESEARCH INTO PRACTICE............................. 25

A. CAAI SUPPORT FOR RESEARCH ACTIVITIES.....................................................................................................25B. DEVELOPING A NEW COHORT OF ASD RESEARCHERS ...................................................................................26C. TRANSLATING ASD RESEARCH INTO PRACTICE ..............................................................................................28

CHAPTER VI: INCREASING AWARENESS OF ASD .................................................................................................. 34

A. RAISING AWARENESS AMONG HEALTH CARE PROVIDERS.............................................................................35B. RAISING AWARENESS IN THE COMMUNITY ...................................................................................................39

CHAPTER VII: IMPROVING SYSTEMS OF CARE FOR CHILDREN WITH ASD AND THEIR FAMILIES........................... 44

A. ADDRESSING BARRIERS TO SCREENING AND DIAGNOSIS ..............................................................................44B. ADDRESSING BARRIERS TO TREATMENT OF ASD ...........................................................................................51C. CREATING COMPREHENSIVE SYSTEMS OF CARE............................................................................................52

CHAPTER VIII: CONCLUSION................................................................................................................................ 56

REFERENCES......................................................................................................................................................... 58

APPENDICES

APPENDIX A: CAAI FUNDING BY PROGRAM AREA..............................................................................................A-1

APPENDIX B: LOGIC MODEL FOR THE DBP PROGRAM........................................................................................B-1

APPENDIX C: STUDY DESIGN MATRIX.................................................................................................................C-1

APPENDIX D: DBP INTERVIEW GUIDE 2011 ....................................................................................................... D-1

APPENDIX E: SELECTED ASD-RELATED DBP RESEARCH PRESENTATIONS ............................................................ E-1

APPENDIX F: SELECTED ASD-RELATED DBP PUBLICATIONS................................................................................. F-1

LIST OF TABLES

Table I.1. DBP Programs Awarded Supplemental CAAI Grants ............................................................................4

Table III.1. CAAI DBP Research Questions ..............................................................................................................9

Table III.2. DBP NIRS Data Elements for the 2010 and 2011 CAAI Modules ........................................................11

Table III.3. Data Elements From DGIS...................................................................................................................13

Table III.4. Data Elements From Grantee Continuation Applications/Progress Reports......................................13

LIST OF CHARTS

FIGURE IV.1. Number of Long-Term Trainees, by Year............................................................................................17

FIGURE IV.2. Number of Medium-Term Trainees, by Year......................................................................................18

FIGURE V.1. Number of Educational Products Related to ASD and Other DD, by Year..........................................28

FIGURE V.2. Number of Faculty and Fellows Participating in Research on the Development and Validation ofScreening and Diagnostic Tools, by Year ............................................................................................29

FIGURE VI.1. Number of Training Events Related to ASD Screening, Diagnosis, and/or Intervention, by Year ......36

FIGURE VI.2. Number of Professionals Trained at Training Events Related to ASD Screening, Diagnosis, and/orIntervention, by Year ..........................................................................................................................37

FIGURE VII.1. Number of Faculty and Fellows Working With Underserved Populations, by Year ...........................47

FIGURE VII.2. Percent of Long-Term Trainees From Underrepresented Groups, by Year........................................48

FIGURE VII.3. Percent of DBP Grantees Completely Meeting Selected Cultural Competency Goals, by Year .........49

FIGURE VII.4. Number of Technical Assistance, Consulting, and Collaboration Activities Provided to GovernmentAgencies, Community Organizations, and Other Entities, by Year.....................................................52

Results of the CAAI: HRSA’s Efforts to ImproveASD Service Delivery Through DBP Training Program Grants

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EXECUTIVE SUMMARY

Under the authority of the 2006 Combating Autism Act (CAA), the Health Resources andServices Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) introduced theCombating Autism Act Initiative (CAAI) in September 2008. As part of the CAAI, MCHB providedsupplemental grants to six existing grantees within the Maternal and Child Health Leadership Educationin Developmental-Behavioral Pediatrics (DBP) Training Program to focus on autism and relateddevelopmental disability education, early detection, and intervention. This report presents the results of a3-year study to assess the DBP programs’ performance in meeting the goals and objectives of the CAAI.

The goal of the CAAI is to enable all children to reach their full potential by developing a systemof services that includes a) screening children early for possible autism spectrum disorders (ASD) andother developmental disorders (DD); b) conducting early, interdisciplinary evaluations to confirm or ruleout ASD and other DD; and c) if a diagnosis is confirmed, providing evidence-based, early interventions.In support of these goals, the objectives of the DBP programs were to:

Increase awareness of ASDReduce barriers to screening and diagnosis and improve systems of careTranslate ASD-related research into practiceTrain professionals to use valid and reliable screening and diagnostic toolsTrain professionals to provide advocacy, counseling, and coordination of care

This study collected and analyzed qualitative and quantitative grantee data to assess the grantees’short-term and intermediate progress in meeting these objectives as well as setting the foundation formeasuring the grantees’ progress toward the CAAI long-term goals of early screening, diagnosis, andintervention.

DBP is a subspecialty of pediatrics that focuses on developmental and behavioral issues inchildren. Developmental-behavioral pediatricians provide diagnosis and treatment for a wide range ofdevelopmental and/or behavioral disorders, including autism. DBP fellows are those physicians receivingspecialized training through the DBP training program to become a developmental-behavioralpediatrician over the course of a 3-year fellowship. In academic settings, DBP physicians train pediatricresidents, who comprise most of the program’s medium-term trainees, to provide screening for ASD andother DD. They also provide DBP training to medical students during an 8-week pediatric clerkship.Finally, DBP programs provide continuing education and other trainings to a broad array of medical andnonmedical professionals.

TRAINING

One of the most commonly cited barriers to timely ASD screening, diagnosis, and intervention isa shortage of health care professionals who provide these services. DBP programs have made asignificant contribution to reducing this barrier by increasing the number of professionals skilled inproviding these services. With the support of the CAAI supplements, DBP programs have:

Increased the number of professionals in the pipeline through recruiting and enrolling more long-term fellows and medium-term traineesEnhanced the focus on autism in the didactic and clinical training through increased faculty timefor teaching and enhanced clinical opportunitiesProvided additional time and opportunities for advocacy, counseling, and coordination of care


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RESEARCH

In order to grow the evidence base for ASD screening, diagnostic, and treatment practices, and totranslate research into practice, DBP researchers conduct rigorous research studies in these areas anddisseminate promising findings. Through CAAI salary support for faculty and fellows, the CAAIsupplements have contributed to:

The development of a new cohort of ASD researchersFaculty- and fellow-led research related to ASD, including translational research on ASDscreening, diagnosis, and treatmentDissemination of evidence-based research via presentations at various venues, publications inpeer-reviewed journals and textbooks, and training-related activities and materials

AWARENESS BUILDING

Despite increased attention to ASD, gaps in awareness persist among pediatricians, parents,educators, and the broader community. The CAAI supplements helped increase awareness of ASDthrough the:

Provision of training and informational events to a wide variety of audiences, including healthcare providers, daycare providers, early interventionists, legal professionals, educators, andfamiliesDevelopment and dissemination of publications and various educational resource materials oncurrent, evidence-based information on ASD, including brochures, newsletters, resource guides,and online toolkitsParticipation of DBP faculty and fellows in broader autism awareness campaigns with State andlocal partners

IMPROVING SYSTEMS OF CARE

Although public health campaigns are urging parents to respond early to signs of developmentaldelays in their children, many families still face significant challenges in accessing comprehensive,coordinated care that includes timely screening, evaluation, and treatment for ASD. With CAAI support,the DBP grantees improved systems of care by:

Engaging in a variety of activities that address specific barriers to screening, diagnosis, andtreatment of ASD; these include a shortage of professionals who are skilled in providing neededASD services, long wait times between screening and diagnosis, difficulties with reimbursement,socioeconomic and language barriers, and othersActively collaborating with a variety of other stakeholders at the micro and macro level topromote more comprehensive, integrated systems of care for ASD

Overall, while ASD has long been a priority of the DBP programs, the CAAI funds allowed thegrantees to place an even greater emphasis on autism in all of their activities. The supplemental fundswere primarily used to recruit additional trainees and to enhance the didactic and clinical training focus onautism, but they also expanded the programs’ capacity to engage in autism-related projects and initiativesby providing salary support for faculty and fellows. Compared to the total costs of the DBP programs,the CAAI supplements were relatively small, but they built on existing infrastructure and accelerated theDBP grantees’ momentum in advancing professional training, research, and service delivery related to


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ASD. Finally, an additional contribution of the CAAI supplement to DBP autism activities has been toprovide funds that could be leveraged with other resources to achieve the objectives of the CAAI.

In order to promote continued progress in meeting the long-term objectives of the CAAI,HRSA/MCHB should continue to support the training of DBP professionals who can confirm or rule outASD, as the shortage of these specialists constitutes one of the most significant barriers to timelydiagnosis and treatment. Furthermore, HRSA/MCHB should encourage DBP programs to disseminatetheir “success stories” in reducing barriers to ASD care and expand on, or replicate, theseaccomplishments where possible. Finally, HRSA/MCHB should continue to support DBP programcollaborations with State-level partners to further support systems-level change in ASD service delivery.


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CHAPTER I: INTRODUCTION

The MCH Leadership Education in Developmental-Behavioral Pediatrics Program is federallyfunded through the Health Resources and Services Administration’s (HRSA) Maternal and Child HealthBureau (MCHB) to train the next generation of leaders in developmental-behavioral pediatrics (DBP), asubspecialty of pediatrics that focuses on developmental and behavioral issues in children from infancy toyoung adulthood. In 2008, MCHB awarded supplemental grants to six existing DBP programs to focuson autism and related developmental disability education, early detection, and intervention.1 This reportpresents the results of a 3-year study to assess the performance of the DBP training programs in meetingthe goals and objectives of these grant awards.

A. PASSAGE OF THE COMBATING AUTISM ACT OF 2006

In 2006, the U.S. Congress passed the Combating Autism Act (CAA) to address the growingconcerns about autism spectrum disorders (ASD). The Act appropriated $42 million for HRSA to supportactivities related to autism education, early detection, and intervention. The Act also appropriated fundsfor the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC); theuse of these funds is not covered in this report. Collectively, these appropriations were intended “torapidly increase and accelerate the pace of scientific discovery in ASD research and to enhancecoordination of Federal efforts to provide services and support for people with ASD and their families.”2

Information about the activities supported by the Act and carried out by HRSA, NIH, and CDC arepresented in the “Report to Congress on Activities Related to Autism Spectrum Disorders and OtherDevelopmental Disabilities Under the Combating Autism Act of 2006 (FY 2006–FY 2009),” which wassubmitted to Congress in December 2010. Information about the HRSA-specific activities is presented ina separate report entitled “Results of the Combating Autism Act Initiative: HRSA’s Efforts to ImproveASD Service Delivery through Training, Research, and State Implementation Grants,” dated December2011.

B. HEALTH RESOURCES AND SERVICES ADMINISTRATION’S COMBATINGAUTISM ACT INITIATIVE

HRSA implemented the CAA through MCHB, which leads the Nation in ensuring that allwomen, infants, children, adolescents, and their families have access to quality health care. Each year,MCHB awards grants to organizations and institutions that work to build healthy communities andhealthy people. These grants promote and support the development of family-centered, culturally andlinguistically competent, community-based systems of care. The grant programs are often targeted tomeet the needs of specific population groups, such as low-income families, racial/ethnic minorityfamilies, children with special health care needs, and rural families. MCHB also builds maternal andchild health services capacity by training health professionals, developing standards of care, andincreasing the capabilities of State and local government maternal and child health (MCH) programs.

In September 2008, under the authority of the CAA, MCHB launched the Combating Autism ActInitiative (CAAI). The overall goal of this Initiative is to enable all infants, children, and adolescents whohave, or are at risk of developing, ASD and other developmental disabilities (DD) to reach their full

1 Two additional DBP programs received supplemental grants in 2009, but are not included in the current study.

2 U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Officeof the Secretary). “Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under theCombating Autism Act of 2006 (FY 2006–FY 2009).” December 2010 (Rev. April 2011). Retrieved from the Department of Health and HumanServices Interagency Autism Coordinating Committee Web site at http://iacc.hhs.gov/reports/reports-to-congress/FY2006–2009/index.shtml.


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potential by developing a system of services that includes screening children as early as possible for ASDand other DD; conducting early, interdisciplinary evaluations to confirm or rule out ASD and other DD;and providing early, evidence-based interventions when a diagnosis is confirmed.

MCHB specified 5 main objectives for the CAAI that support those specified in the authorizinglegislation. They include:

1. Increase public and provider awareness of ASD and other DD2. Reduce barriers to screening and diagnosis3. Support research on evidence-based interventions for ASD and other DD4. Promote the development of evidence-based guidelines for interventions5. Train professionals to use valid and reliable screening tools to diagnose or rule out and to provide

evidence-based interventions for ASD and other DD

To meet these objectives, MCHB awarded grants to three distinct but complementary programareas:

TrainingResearchImplementation of State plans to improve ASD service delivery

In addition to funding activities in these three areas, the MCHB grants also provide opportunitiesfor collaboration within and across each area. These collaborations form the foundation of a broad anddeep network that can promote systems change more effectively and efficiently than any one program onits own. HRSA’s unique emphasis on collaboration ensures, for example, that professional training isinformed by the latest research, that health care professionals contribute to the research agenda byidentifying future research needs, and that a strong infrastructure exists to support the work of bothresearchers and health care professionals.

Six of the CAAI grants were awarded to DBP programs for the primary purpose of increasing thenumber of professionals who can provide ASD screening and diagnostic evaluation services. Thesegrants were awarded in September 2008 for a period of 3 years. See Appendix A for a description of allthe CAAI grant programs.

C. OVERVIEW OF THE DBP TRAINING PROGRAM

DBP is concerned with the broad range of behavioral, psychosocial, and developmental issuesthat present in primary care pediatric practice, including motor skills, thinking, communication, social andemotional functioning, and behavior regulation. Developmental-behavioral pediatricians providediagnosis and treatment for a wide range of developmental and/or behavioral disorders, including autism.Once a diagnostic evaluation is recommended, such as when a child screens positive for ASD, the child ismost often referred to a developmental-behavioral pediatrician for an evaluation to confirm or rule outASD.

The overall purpose of the DBP training program is to enhance the behavioral, psychosocial, anddevelopmental aspects of pediatric care through:

1. Supporting developmental-behavioral pediatric fellows preparing for leadership roles as teachers,investigators, and clinicians advancing the field of DBP


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2. Providing pediatric practitioners, residents, and medical students with essential biopsychosocialknowledge and expertise in the broad range of behavioral, psychosocial, and developmentalissues that present in primary care pediatric practice3

The 3-year fellowship curriculum includes didactic instruction in the classroom and experientialcomponents both in clinics and in the community, such as at schools for children with autism. Leadershipskills are developed throughout the fellowship experience, including through teaching and programadministrative responsibilities, as well as by incorporating the MCH core leadership competencies intothe curriculum. Research skills are honed through their participation in research seminars andinvolvement in faculty research studies, and the conduct of individual fellow research projects. Finally, inaddition to training fellows, residents, and medical students, grantees provide continuing education (CE)activities for practicing physicians and offer technical assistance and consultation to State Title Vagencies and other organizations around matters related to DBP, such as autism screening practices.

The DBP programs strive to provide care to children and families in a family-centered, culturallycompetent manner that meets the needs of diverse populations. In order to address the needs of childrenwith complex developmental-behavioral problems, such as autism, developmental-behavioralpediatricians employ an interdisciplinary approach, working in concert with other health professionalssuch as speech pathologists, psychologists, pediatric neurologists, nurse practitioners, occupationaltherapists, social workers, educators, and nutritionists. This approach maximizes their ability to meet themultifaceted advocacy, counseling, and care coordination needs of these children and their families.

DBP trainees generally fall into three main classifications according to the duration of theirtraining: long-, medium-, and short-term trainees.

Long-term trainees, or fellows, are physicians receiving specialized training to become adevelopmental-behavioral pediatrician over the course of a 3-year fellowship.Medium-term trainees are primarily pediatric and medical residents and are trained by DBPphysicians in academic settings to provide screening. Their training typically occurs as part of aDBP rotation during the residency and usually encompasses about 160 training hours. Whilemedical residents represent the typical medium-term trainee, there are occasionally other types ofprofessionals that fall into this category, including health practitioners brought in from thecommunity to receive ASD training.Short-term trainees are typically medical students that obtain DBP training during an 8-weekpediatric clerkship in their third year of medical school. More generally, however, the short-termtrainees are defined as any trainee receiving fewer than 40 hours of DBP training. A wide arrayof other professionals receive this scope of training from the DBP CE and other trainingactivities, including educators, primary care providers, childcare workers, and other professionals.

D. DBP AND THE CAAI SUPPLEMENTAL GRANTS

In 2008 under the CAAI, 6 (of the 10) existing DBP programs were awardedexpansion/supplemental grants of $50,000 per year for 3 years to enhance the focus on autism in theirtraining activities.4 A list of these six programs is presented in Table I.1. Because the funding wasawarded to existing programs, the grantees were able to build on their existing infrastructure to maximizethe impact of the grants with minimal to no start-up costs.

3 The DBP program should be distinguished from the MCHB-supported Leadership Education in Neurodevelopmental Disabilities (LEND)program, which focuses primarily on caring for children with neurodevelopmental disabilities.

4 Their original grants included approximately $142,000 in funding each year before the addition of the $50,000 CAAI supplemental grants.


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Table I.1DBP Programs Awarded Supplemental CAAI Grants

Organization Location (City, State) Funding AmountAlbert Einstein College of Medicine New York, NY $50,000 each year for 3 yearsBoston University Boston, MA $50,000 each year for 3 yearsChildren’s Hospital of Boston Boston, MA $50,000 each year for 3 yearsCase Western Reserve University Cleveland, OH $50,000 each year for 3 yearsChildren’s Hospital of Philadelphia Philadelphia, PA $50,000 each year for 3 yearsYale University New Haven, CT $50,000 each year for 3 years

To reach the long-term CAAI goals of early screening, diagnosis, and intervention, the DBPgrantees dedicated their supplemental funds to meeting the following objectives, around which this reportis organized.

1. Training, including training on the use of valid and reliable screening and diagnostic tools and inthe provision of advocacy, counseling, andcoordination of care

2. Research, including research on screening anddiagnostic practices for ASD, and translating researchinto practice

3. Awareness Building, including dissemination ofinformation to a broad array of professional andnonprofessional audiences on early signs andsymptoms of ASD, screening and diagnosticpractices, and available systems of services

4. Reducing Barriers and Improving Systems ofCare, including activities to reduce barriers toscreening, diagnosis, and treatment of ASD, and the provision of technical assistance andconsultation to various State agencies and organizations

E. ORGANIZATION OF THIS REPORT

This report describes the efforts and progress of the DBP grantees in meeting the objectives of theCAAI. Chapter II highlights some of the issues related to ASD that prompted the passage of the CAA.Chapter III describes the study design, data sources, and analytic methods. The remaining chapters reportthe findings of this study with respect to these DBP grantees’ four main areas of activity: training(Chapter IV), research (Chapter V), increasing awareness (Chapter VI), and reducing barriers andimproving systems of care (Chapter VII). Conclusions about the DBP programs’ success in achieving theCAAI objectives are discussed in Chapter VIII.

REFLECTING ON THE IMPACT OFTHE CAAI

“[The CAAI supplement has] made areal difference. It’s certainlyenabled us to do a lot of things thatwe wouldn’t have been able to do,and has had a really positive impacton the community.”

– DBP program director,Yale University


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CHAPTER II: BACKGROUND ON AUTISM SPECTRUM DISORDERS

Autism spectrum disorders (ASD) are a general classification of neurodevelopmental andbehavioral disorders that impede the normal developmental progression of young children. Typicalsymptoms include, but are not limited to, lack of reciprocalsocial interaction, communication difficulties, repetitivebehavior patterns, self-injurious behaviors, difficulty eatingand/or sleeping, and abnormal responses to stimuli(Dumont-Mathieu & Fein, 2005). In addition to thesebehavioral symptoms, several biomarkers are often found inchildren with ASD, including high blood-monocyte count,vitamin/mineral deficiencies, hyperthyroidism, lowcholesterol, elevated testosterone, gastrointestinal (GI)problems, and food allergies (Bradstreet, Smith, Baral, &Rossignol, 2010). Because affected children can varywidely in terms of their behavioral and biologicalsymptoms, diagnosis is best accomplished by aninterdisciplinary team of highly trained professionals whospecialize in one or more functional areas (e.g., developmental-behavioral pediatricians, speech andlanguage pathologists, and psychologists).

A. PREVALENCE RATES

An estimated 673,000 children age 3 to 17 years in the United States have ASD, or about 110 per10,000, according to parent reports of diagnosis from the 2007 National Survey of Children’s Health(Kogan et al., 2009). ASD diagnoses have escalated considerably in the past 15 years. A recent study oftrends in the prevalence of disabilities in U.S. children between 1997 and 2008 showed a nearly fourfoldincrease in ASD between 1997-1999 and 2006-2008, using data from the National Health InterviewSurveys (Boyle et al., 2011). In 2009, CDC released a report based on data from the Autism andDevelopmental Disabilities Monitoring (ADDM) Network that estimated a 57-percent increase in theaverage prevalence of ASD among 8-year-old children between the 2002 and 2006 ADDM surveillanceyears (Rice, 2009).

The number of confirmed diagnoses varies across States, race/ethnicity, and sex. Prevalence ratesrange from a low of 4.2 per 1,000 8-year-old children in Florida to a high of 12.1 per 1,000 8-year-oldchildren in Arizona and Missouri (Rice, 2009). A disproportionate percentage of boys versus girls arediagnosed with ASD (Kogan et al., 2009; Rice, 2009), and this difference is becoming more pronounced(Rice, 2009). Between 2002 and 2006, rates of ASD among 8-year-old girls increased by 48 percent,while rates for boys of the same age increased by 60 percent. Studies also show a lower prevalence ofASD among Black and Hispanic children compared to their White counterparts (Kogan et al., 2009; Rice,2009).

B. NEED FOR EARLY SCREENING AND DIAGNOSIS

A growing body of evidence indicates that early detection and intensive early intervention forASD can profoundly improve a child’s developmental outcomes, both by reducing symptoms andincreasing his/her ability to learn new skills (Shattuck et al., 2009). Gains in verbal and nonverbalcommunication, intelligence-test scores, and peer interaction are among some of the benefits that havebeen found to be associated with early intervention efforts (Wiggins, Baio, & Rice, 2006).

“Such disparities in identification ofASD indicate a critical need to trainhealth and education professionals,especially those working inunderserved communities, aboutthe prevalence and presentation ofASD and its frequent co-occurrencewith severe cognitive disability.”

– Mandell et al., 2009


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Despite widespread agreement about the importance of early screening for ASD, significantdelays persist between the age when diagnosis is possible and the age at which it actually takes place.Although research indicates that children as young as 2 can now be effectively diagnosed (Bryson,Rogers, & Fombonne, 2003), data from the ADDM indicate that the median age of formal identificationis 5.7 years, with 27 percent of children remaining undiagnosed at age 8 (Shattuck et al., 2009). Commonreasons for delayed diagnosis include inadequate screening practices, a shortage of health careprofessionals trained to screen for and diagnose or rule out ASD, slow response to parental concerns, andlack of awareness of the early signs and symptoms of autism (Mandell et al., 2009).

The shortage of trained experts in ASD, coupled with the complexity and heterogeneity of thedisorder’s presenting symptoms, also contribute to underdiagnosis and misdiagnosis. Some researchsuggests that the lower reported rates of ASD among girls and minorities may be partly attributable toclinicians underdiagnosing the disorder among these groups (Mandell et al., 2009; Liptak et al., 2008). Ina study by Mandell et al. (2009), experienced clinical reviewers used the medical and education records ofapproximately 2,600 8-year-olds to assess whether each child had documented symptoms that met thecriteria for ASD. In total, only 58 percent of children in the study meeting the case definition of ASD hadreceived an official diagnosis. Compared to White children, Black, Hispanic, and children of “other”race/ethnicity who met the criteria for ASD were less likely to have been diagnosed with the disorder.Girls who met the case criteria for ASD were also less likely than were boys to have been diagnosed. Thedisparities in identification of ASD were most apparent among Hispanic and Asian children with IQslower than 70. The researchers posited that lack of awareness about the frequent co-occurrence of ASDwith cognitive disability might preclude clinicians from further evaluating and identifying children whohave a cognitive disability, but are also on the spectrum, resulting in underdiagnosis (Filipek et al., 1999).The researchers further suggested that clinicians might be less likely to consider ASD as a possibility forchildren in certain groups if the clinicians know that these groups are statistically less likely to have ASD.Another impediment to accurate identification of ASD stems from the fact that some of the disorder’ssymptomatic behaviors are also commonly associated with other conditions, such as hyperactivity orobsessive-compulsive disorder.

C. NEED FOR EFFECTIVE INTERVENTION

In contrast to the swift and steep rise of ASD in the population, the development of medical andbehavioral interventions for ASD and research findings on their efficacy are evolving less rapidly.Because ASD is characterized by both cognitive and behavioral deficits, coupled with complex medicalsymptoms, treatment is not straightforward, and evidence regarding the efficacy of many currentinterventions lags behind the body of evidence that guidesphysicians in the treatment of other conditions. On thebehavioral and mental health side, it remains unclear whatthe “active ingredients” of effective treatment are forchildren with ASD, and a generally accepted standard ofcare is not yet available. Furthermore, few treatments havefocused on the core deficits of autism, particularly in thecritical area of social communication. Existing studies oftreatments have been notable in their focus on very small,homogeneous samples of children, excluding minorities andunderserved children. Additional research is needed toassess whether current evidence-based practices in ASDtranslate to more ethnically, racially, culturally, andeconomically diverse samples of children and families.

“There is a growing body ofevidence that supports the efficacyof certain (ASD) interventions inameliorating symptoms andenhancing functioning, but muchremains to be learned.”

– Excerpt from American Academyof Pediatrics policy statement

“Management of Children WithAutism Spectrum Disorders”

(Myers & Johnson, 2007)


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With respect to medical interventions for ASD, because physicians and parents have traditionallyviewed ASD as a communication and behavior disorder, treatment has tended to focus on these aspects,while medical conditions in patients have received less attention. As a result, physicians have noevidence-based guidelines to support their clinical decisionmaking in the treatment of medical conditionsassociated with ASD (e.g., seizures, sleep problems, GI disorders, and metabolic conditions). In theabsence of such guidelines, medical treatment of children with ASD has typically been provided byspecialists with specific training and expertise in ASD. Since the demand for these specialists exceeds thesupply, families often have difficulty accessing the care they need for their child, and some come to relyon alternative treatments that have not been proven safe and effective. Given both the heavy burden ofthe impairments on individuals and their families and the high cost to the health care system, there is acritical need to address existing gaps in current knowledge about the effectiveness of both behavioral andmedical interventions.

Cost is another barrier that families face in accessing appropriate intervention for a child withASD. Current behavioral interventions are often lengthy and costly, making participation in them a majorburden for families. The most intensive interventions cost about $50,000 per year and often involve manyhours per week over several years (Sallows & Graupner, 2005). Additionally, some insurance companieshave been hesitant to reimburse individuals and providers for ASD diagnosis and treatment, exacerbatingthe burden on families.

D. NEED FOR COMPREHENSIVE, COORDINATED SYSTEMS OF CARE

The system of services for ASD and other DD hasmultiple points of entry, starting with pediatricians andearly childcare providers who can identify initial signs ofdevelopmental delay, followed by a team of specialists whocan confirm or rule out an ASD diagnosis. For childrenwith a confirmed diagnosis, the next point of entry involvesbehavioral, medical, and other intervention therapies.Barriers at each point of entry are common; for example,universal screening is still not a standard practice amongpediatricians, professionals who can diagnose ASD are inshort supply, and navigating the complex system of ASDservices is difficult, especially in areas where that system isfragmented or incomplete.

Providers and parents alike face multiple challenges in navigating the ASD service deliverysystem. For one, comprehensive care for ASD ideally includes services from an interdisciplinary team ofprofessionals, yet many professionals are not accustomed to collaborating with providers from otherdisciplines. Such collaboration takes time and is typically not reimbursable, so few health care systemssupport it.

A second and related challenge stems from the fact that the ASD system of care includes differentservice sectors, such as medical, behavioral, and allied healthcare; education; and State agencies. In thesame way that physicians who specialize in one area of medicine tend not to work closely with physicianswho specialize in a different area, providers from different service sectors tend not to work with orunderstand the role of other sectors. Health care providers and educators, for example, do not typicallyinteract with one another, despite the fact that they each play an integral part in providing support servicesto children with ASD.

“Though a number of effectiveservices and funding options forindividuals with ASD exist, they tendto be scattered, fragmented, andpoorly coordinated.”

– Excerpt from the InteragencyAutism Coordinating Committee

ASD Services Roadmap(U.S. Department of Health and

Human Services, 2005)


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In addition to the problem of having no system in place to support a more coordinated approachto care, many communities lack a well-mapped referral system, whereby providers know what the “nextsteps” are for families in need of evaluation or intervention services, and are able to direct families to theappropriate set of resources. Some States are beginning to address these barriers by developing long-termplans to implement a new service delivery model for ASD that fosters interagency collaboration and acoordinated, interdisciplinary team-based approach to care. These changes promise to improve families’access to more comprehensive ASD services, while enhancing providers’ capacity to deliver the bestpossible care for children with ASD. A great deal more work is needed, however, before such changesare implemented nationwide.


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CHAPTER III: OVERVIEW OF THE STUDY

This chapter provides an overview of a 3-year study of the DBP programs that receivedsupplemental CAAI grants. The study was designed and implemented between 2008 and 2011 to assessthe performance of the DBP grantees in meeting the goals and objectives of the CAAI. Section Aoutlines the study goals and objectives. Section B describes the study design procedures, includingdevelopment of the logic model and research questions. Sections C and D identify the data sources andanalysis methods. Study limitations are discussed in Section E.

A. STUDY GOALS

The overall goals of this study are 1) to measure the DBP grantees’ activities and outcomes toassess their progress in meeting the five main objectives of MCHB’s CAAI, and 2) to lay the foundationfor measuring the grantees’ progress toward the long-term goals specified in the authorizing CAAlegislation.

B. DEVELOPMENT OF THE LOGIC MODEL AND RESEARCH QUESTIONS

As a starting point for developing the research design, the study team developed an overall logicmodel that links the DBP program inputs and activities to the expected short-term, intermediate, and long-term outcomes (see Appendix B). The logic model provided a visual framework for the study design, andformed the basis for developing the study research questions. To inform each component of the logicmodel, the study team reviewed each of the DBP grant applications and developed a short summary foreach grantee of its project goals, objectives, activities, and key outcomes.

As we considered the alignment of the DBP grantees’ activities with the five major goals of theCAAI, we determined that the grantees are primarily dedicated to training professionals, but they are alsoincreasing awareness and knowledge of ASD and other DD, enhancing capabilities in the utilization ofscreening and diagnostic tools, translating ASD-related research into practice, and improving systems ofcare and coordination of care for children with ASD and other DD. These five areas provided the basisfor developing the five primary research questions, which correspond to the five main objectives of theDBP grantees, as shown in Table III.1.

Table III.1CAAI DBP Research Questions

DBP Objective Research QuestionAwareness Building To what extent are the DBP grantees increasing awareness of developmental

milestones; early signs and symptoms of ASD; valid screening tools; validdiagnostic tools; evaluation referral procedures; and evidence-basedinterventions among health care and allied health professionals, educators,community service providers, families, and the public?

Reducing Barriers and ImprovingSystems of Care

To what extent are the DBP grantees reducing barriers to screening anddiagnosis?

Contributing to Research andTranslating Research Into Practice

To what extent are the DBP grantees contributing to ASD research andtranslating ASD-related research into practice?


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DBP Objective Research QuestionTraining Professionals How have the DBP programs impacted the supply and training of

professionals who can effectively:a) Use valid and reliable screening tools?b) Confirm or rule out a diagnosis of ASD using valid and reliable

diagnostic tools?How are the DBP training programs training professionals to provideadvocacy, counseling, and coordination of care for children and the familiesof children with ASD?

After identifying the primary research questions, the study team developed a series of secondaryquestions that would provide the framework for a more detailed level of analysis. These questions helpedspecify indicators that would 1) qualitatively describe and document how the grantees use Federal fundsto achieve their program objectives; 2) quantitatively measure the short-term and intermediate outcomesof their federally funded activities; and 3) set the foundation for measuring the grantees’ long-term impacton individuals with ASD and other DD. See Appendix C for a crosswalk of the primary and secondaryresearch questions, data sources, and data elements used in this study.

To ensure that the logic model and research questions reflected an accurate understanding of thegrantees’ goals and objectives, as well as their strategies for meeting those goals and objectives, the studyteam conferred with the grantees. During the first CAAI grantee meeting held in December 2008, thestudy team facilitated a breakout session with the DBP grantees to discuss the study plans and activitiesand to obtain their feedback. The team presented the logic model and asked grantees to comment on ourunderstanding of their primary activities and the link between those activities and their measurableoutputs and outcomes. The study questions, their associated data elements, and the proposed data sourceswere also discussed to assess 1) whether any of the questions should be revised, 2) which data elementswould provide the most appropriate measure of their performance, and 3) which elements could feasiblybe collected within the data collection timeline. Based on grantee recommendations, the study teamrefined the research questions and data elements. Following the meeting, a second round of feedback onthe revised logic model and study questions was solicited via email correspondence from the DBPgrantees. Based on careful review of the grantees’ comments, the study team revised the logic model,study, and data elements for the final study design plan.

C. DATA COLLECTION

Collection of new data for the DBP study began in July 2009 and ended in July 2011. This studywas designed to measure the results of the grantees’ activities using both quantitative and qualitative datacollection methods. This mixed-methods approach to data collection was used because it has the potentialto provide a richer understanding of the grantees’ activities and progress toward meeting the goals of theCAA. Whereas quantitative measures provide clear, quantifiable markers of progress, qualitative data cansometimes better capture the full spectrum of achievements realized by grantees. For example, anincrease in the number of awareness-building efforts is an important quantifiable outcome of thesupplemental funding. However, through qualitative research, we can obtain information on theparticular audiences that the grantees are targeting in their awareness-building efforts, as well as the typesof information disseminated, the means of dissemination, and information about which efforts were mostsuccessful and why.

Quantitative data for this study were collected through the National Information ReportingSystem (NIRS) and the Discretionary Grant Information System (DGIS). Qualitative data were collectedthrough grantee applications, progress reports, and in-depth, semi-structured interviews with DBP granteeprogram directors. In the sections that follow, we describe each of these data collection methods in detail.


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1. National Information Reporting System (NIRS)

NIRS is a Web-based data reporting system developed and managed by the Association ofUniversity Centers on Disabilities (AUCD). DBP grantees use this system to report data on their trainingprograms, projects, activities, and products in order to comply with Federal reporting requirements.

To assess the DBP grantees’ progress toward meeting the objectives of the CAAI, the study teamdeveloped a set of new data elements to be collected through NIRS. These data elements are based thegrantees’ goals, objectives, activities, and the intended outputs/outcomes of those activities. Table III.2lists these data elements by the DBP objective they address. The six DBP grantees that were awardedCAAI expansion grants were asked to provide their responses to these data elements at three points intime, following the end of the academic school year: July 2009, July 2010, and July 2011.

The data collected through the new NIRS module in July 2009 were considered pilot data.Treating this data collection as a pilot provided an opportunity to assess what information the granteeswere able to report with confidence, what information was not yet available but could be reported in thefuture, and what information might not be feasible to collect. This pilot also provided an opportunity torefine the questions for the 2010 and 2011 modules to ensure that they provided quality data.

Table III.2DBP NIRS Data Elements for the 2010 and 2011 CAAI Modules

DBP Objective Data ElementI. Training and EducationTrainingProfessionals

Total number of Short-Term, Medium-Term, and Long-Term trainees

Number of DBP trainees who completed coursework covering one of more of the followingtopics: early signs of ASD and other DD; screening, diagnosis, and/or evidence-basedinterventions for ASD and other DD: Medium-Term, Long-TermNumber of DBP trainees who participated in practica/field work that included one ormore of the following: early signs of ASD and other DD; screening, diagnosis, and/orevidence based interventions for ASD and other DD: Medium-Term, Long-TermTotal number of CE events that addressed one or more of the following topics: valid,reliable screening tools; valid diagnostic tools; and/or evidence-based interventions forASD and other DDTotal number of professionals trained through CE events reportedTotal number of training events (excluding CE) offered relating to one or more of thefollowing topics: valid, reliable screening tools; valid diagnostic tools; and/or evidence-based interventions for ASD and other DDTotal number of professionals trained through training events reportedNumber of university courses that included information on one or more of thefollowing topics: valid, reliable screening tools; valid diagnostic tools; and/or evidence-based interventions for ASD and other DDTotal number of professionals taught through courses reportedNumber of university courses that included specific training on advocacy, counseling,and coordination of careTotal number of professionals trained through courses reported


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DBP Objective Data ElementII. Technical Assistance and CollaborationsBuildingAwareness

Number of technical assistance/consultation/collaboration activities provided to Stateor local health agencies, education or social service agencies, community-basedorganizations, or other entities

III. Reducing BarriersReducing Barriersand ImprovingSystems of Care

Number of DBP faculty and/or fellows who worked in clinical settings located in anunderserved area or who are working with underserved populations

IV. Research and DisseminationContributing toResearch andTranslatingResearch intoPractice

Number of faculty and fellows who participated in research on the development andvalidation of screening tools, diagnostic tools

BuildingAwareness andTranslatingResearch intoPractice

Number of ASD and other DD-related articles in peer-reviewed journals, educationalproducts developed and disseminated (other than peer-reviewed), presentations

2. Discretionary Grant Information System (DGIS)

DGIS is a program- and performance-measurement system developed by MCHB to assess theeffectiveness of its programs and help project officers monitor the progress made under its grants.MCHB has developed 37 national performance measures and many program-specific performancemeasures across various maternal and child public health areas. The performance measures for a givenprogram are assigned by the MCHB programs based on applicability of the performance measures.

All DBP grantees track and report the degree to which their programs address severalperformance measures that reflect the overarching goals and priorities of the MCHB. These data arecollected through DGIS on an annual basis. The study team reviewed the performance measures toidentify those that met two criteria: 1) they were relevant to the DBP grantees’ goals under the CAAI,and 2) they could contribute information to the study that was not being collected through another source.The data elements obtained from the DGIS are shown in Table III.3. These two elements pertain tocultural competency and staff diversity, which contribute to the programs’ ability to reduce barriers tocare for children and families from underserved populations. These data elements were available for the2008–09 and 2009–10 reporting years.

One caveat in using the performance measures reported in DGIS is that the questions are notspecific to ASD. It is clear, however, from both the language of the legislation and the study team’sdiscussions with MCHB that the intent of the legislation is to achieve improved outcomes for all childrenwith DD through changes in training, health care delivery systems, and infrastructure. Additionally, itcan be argued that it is impractical to try to parse out the impact of the grant funding on a single segmentof the population that the DBP programs serve, because advances specific to autism are likely to impactthe identification and treatment of other disabilities and vice versa.


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Table III.3Data Elements From DGIS

DBP Objective DGIS Measure DescriptionReducing Barriersand ImprovingSystems of Care

PM #9 The percent of participants in MCHB long-term training programs who arefrom underrepresented groups

PM #11 The degree to which MCHB long-term training grantees include culturalcompetency in their curricula/training

3. Grant Applications

The grant applications provided a baseline description of the activities each grantee intended topursue. To help inform the study design, the study team read the applications thoroughly and developedshort lists of the planned activities for each grantee. We obtained updates on the grantees’ activities eachgrant year by reviewing their annual continuation applications/summary progress reports, discussedbelow. These updates helped the study team track changes between the proposed and actual activities.

4. Annual Continuation Application/Summary Progress Reports

A noncompeting continuation application is required for continuation of grant funding for asubsequent budget period. The continuation application, also referred to as a summary progress report,submits the budget request for the next year of funding and serves as the primary source of informationregarding activities, accomplishments, outcomes, and obstacles related to achieving project outcomesduring the current budget period. It also provides documentation necessary to justify continuation of theproject, including plans for upcoming project periods.

In order to reduce respondent burden and maximize efficiency, the study team used the DBPgrantees’ continuation applications/summary progress reports as an additional source of qualitative datafor this study. Data elements gleaned from these reports are shown in Table III.4. These elementsaddress each of the DBP objectives under the CAAI, as shown in Appendix C.

Table III.4Data Elements From Grantee Continuation Applications/Progress Reports

Progress Report Section or Form Description of DataSection C: Training Training activities and outcomes, including data on training curricula

and clinical rotations; training activities focused on valid and reliablescreening and diagnostic tools; training activities focused on theprovision of advocacy, counseling, and coordination of care; trainingactivities focused on increasing awareness of ASD; activities thatexpand access to screening and diagnosis; and research activitiesfocused on translating research into practice

Section D: Collaboration/Coordination inSupport of MCH Training

Description of partnerships and collaborations to provide communityoutreach and education; to translate research into evidence-basedpractice; to train others on use of practices; and to contribute toimproved systems of care

Section F: Performance Measures Leadership activities that contribute to improved systems of care andthe provision of advocacy, counseling, and coordination of care;activities designed to increasing cultural competency and ability toserve underserved populations; information on the developmentand dissemination of products and publications


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Progress Report Section or Form Description of DataSection G: Activities Supporting Objectivesof the National MCH Strategic Plan

Description of collaboration and coordination activities in support ofMCH training that contribute to improved systems of care

5. Semi-Structured, In-Depth Interviews

To supplement the qualitative data that grantees submit in their summary progress reports, weconducted in-depth interviews with each of the six DBP project directors twice over the course of thegrant period. The purpose of these interviews was 1) to gather more detailed information about program-level activities and accomplishments related to DBP objectives under the CAAI, 2) to provide a richcontext for understanding the quantitative measures collected in the NIRS data, and 3) to provide acomprehensive picture of the full range of contributions that each DBP grantee is making toward theoverall goals of the CAA and CAAI.

Following the development of the interview protocol, the study team contacted each DBPprogram director to schedule a telephone interview. Interviews were conducted at two points in time toassess what each DBP program had done to accomplish the goals and objectives of the CAAI, and toassess the outcomes of those efforts. The first round of interviews was conducted after the first grant year(from November 2009 to January 2010), and the second round was conducted toward the end of the grantprogram (from March to April of 2011).5 See Appendix D for an example of the interview protocol usedduring the 2011 interviews.

D. ANALYSIS STRATEGY

To ensure accurate synthesis and analysis of the qualitative data, we used NVivo 8 researchanalysis software. This software allowed us to organize the interview transcripts, progress reports, andapplications. Each of these data sources was uploaded and coded into logical themes according to themajor activities of the grantees and the accomplishments with the CAAI funds in each of those activities.Once all data were coded and all themes were identified, we conducted the analysis. The results of thisanalysis are reported in Chapters IV through VII of this report.

Quantitative data from the NIRS and DGIS data sources were used to supplement the richinformation gleaned from the interviews, progress reports, and applications. We compiled the 2008–09,2009–10, and 2010–11 rounds of NIRS data collection and tabulated data elements across years usingExcel software. Results of these tabulations are presented in Chapters IV through VII of this report. Wesimilarly extracted and tabulated the 2008–09 and 2009–10 DGIS data elements using Excel software.For DGIS data element #9, we calculated the average percent of participants in the training program whoare from underrepresented groups, and for DGIS data element #11, we tabulated the percent of granteeswho completely met their goals regarding four selected cultural competency objectives. Results of thesetabulations are included in Chapter VII of this report.

E. STUDY LIMITATIONS AND CONSIDERATIONS

The study team examined data from multiple sources in order to evaluate the effectiveness of theDBP programs in meeting the objectives of the CAAI. However, no data source is perfect, and certainlimitations should be noted. In this section, we briefly list the limitations of the data resulting from this 3-year study. In general, long-term program impacts are not discernible within 3 years of a grant award.

5 Note that the second round of DBP interviews needed to be conducted at this time to accommodate the timing of the Report to Congress(mentioned in Chapter I).


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One of the strengths of the CAAI, however, is that it minimized start-up times and implementation-relateddelays by awarding grants to existing DBP programs that already had systems in place to carry out thegrant-related activities: the DBP programs have been training professionals for decades on thedevelopmental aspects of pediatric care, including ASD. Because these grantees were building onexisting infrastructures and expertise, they were able to make considerable progress in a short period oftime, as evidenced by the outputs and short-term outcomes documented in this report. They alsofrequently leveraged CAAI funds with other funding sources to maximize the impact of the supplementalgrants. As noted earlier, however, it will likely be several more years before long-term outcomes, such asearlier screening and shorter delays between screening and diagnosis, can be fully realized. Thus, theoutputs and short-term outcomes of the CAAI grantees reported herein represent necessary precursors ofmeeting those long-term goals of the CAA (see logic model in Appendix B).

A few aspects of the study should be kept in mind when interpreting results. First, because theCAAI funds were used to supplement preexisting grants, it is difficult to parse out the effects of the CAAIsupplemental funds from the effects of the preexisting funds. Instead, the outcomes likely indicate whatmore can be accomplished when additional investments are made in an existing program. For example,all DBP programs provided training in ASD screening and diagnosis prior to the CAAI, but thesupplemental grants enabled grantees to provide that training to more professionals and to increase theemphasis on ASD by providing additional faculty time for teaching and expanding clinical opportunitiesrelated to ASD.

Second, DBP grantees perform a diverse variety of activities, making it difficult to developuniform performance measures across all six grantees. As such, many of the examples highlightedcomprise ‘success stories’ from one or several grantees and do not apply for all grantees. For example,some grantees worked more on conducting translational research, whereas other grantees focused moreheavily on awareness-building activities.

Finally, because clinical skills and activities relating to identification and treatment of ASD arenot altogether different from those needed to identify and treat other developmental disabilities, the CAAlegislation covers both ASD and other DD. Some of the activities supported by the CAAI grants includedboth ASD and other DD (e.g., training professionals and infrastructure building) while other activitiesspecifically targeted ASD (e.g., research on medical interventions). For simplicity, this report refers toASD alone.


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CHAPTER IV: TRAINING PROFESSIONALS TO SCREEN FOR,DIAGNOSE, AND TREAT ASD

One of the most commonly cited barriers to timely ASD screening, diagnosis, and intervention isa shortage of health care professionals who provide these services. Since training is the primary missionof the DBP programs, they are poised to make a significant contribution to reducing this barrier. TheCAAI supplemental funding allowed the DBP grantees to build on their existing infrastructure andenhance the focus on autism screening, diagnosis, and treatment in their training efforts. These activitiesprimarily addressed the DBP objectives of training professionals to:

Use valid and reliable screening and diagnostic toolsProvide advocacy, counseling, and coordination of care

This chapter discusses the 3 primary ways that the DBP grantees used the CAAI funds to increasethe number of professionals who have the necessary skills to provide ASD screening, diagnosis, andtreatment. Section A describes how they recruited and supported more trainees; Section B discusses howthey enhanced the ASD-related content in the didactic and clinical components of the program; andSection C explains how they provided increased time and opportunities for advocacy, counseling, andcoordination of ASD care activities.

A. INCREASED NUMBER OF PROFESSIONALS IN THE PIPELINE

One of the primary contributions of the CAAI supplemental funding has been to allow theprograms to increase the recruitment and enrollment of long- and medium-term trainees. This sectiondiscusses how these efforts have expanded the pipeline of professionals to screen for and diagnose ASD.

1. Increases in the Number of Long-Term Trainees

Long-term fellows are those trainees receiving more than 300 hours of training over the course ofa 3-year fellowship. Three of the six DBP programs receiving the autism supplement reported using thefunds to support an additional long-term fellow at some point during the grant period. In the context offairly small programs with only a handful of fellows at any given time, an additional fellow constitutes asubstantial contribution, increasing the number of fellows in a given program by as much as 33 percent ina given year. The aggregate number of long-term trainees among DBP grantees increased from 24 in2008–09 to 30 in 2010–11, a 25-percent increase (Figure IV.1)


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24 24

30

0

5

10

15

20

25

30

35

2008–09 2009–10 2010–11

Num

berof

Long-Term

Trainees

Academic Year

FIGURE IV.1NUMBER OF LONG-TERM TRAINEES, BY YEAR

Source: NIRS data

Although not apparent in Figure IV.1 above, some programs used the CAAI funds to recruit anadditional fellow between 2008–09 and 2009–10 as well. These increases are not easily observed in the

aggregate number of long-term fellows, because thoseprograms that increased their number of fellows between2008–09 and 2009–10, for example, were offset by programswhose number of fellows decreased during the same timeperiod as a result of normal fluctuations in hiring. Overall,half of the programs reported utilizing the supplemental fundsspecifically for hiring fellows at some point over the grantperiod. In each of these cases, the program directors reportedthat the addition of the fellows was one of the mostsignificant contributions of the supplemental funding, whichthey could not have achieved without the additional financialsupport.

These additions not only increased the number ofDBP specialists in the pipeline, but in some cases they alsoincreased the diversity of the fellows and hence the programs’ability to reach underserved populations. For example, the

DBP program at the Children’s Hospital of Boston was able to hire a Chinese-American fellow fluent inboth Mandarin and Cantonese, which dramatically improved its ability to care for this underrepresentedpopulation in its community.

2. Increases in the Number of Medium-Term Trainees

Trainees receiving between 40 and 300 hours of training are classified as medium-term trainees.The CAAI supplement has increased the number of future pediatricians in the pipeline skilled in ASDscreening by enabling the DBP programs to train more medium-term trainees. While long-term traineesare specialists in diagnosing ASD and other DD, medium-term trainees are typically professionals whowill be, or are, in the position to screen children for these conditions. Usually, these trainees are medical

EXPANDING THE PIPELINE OF DBPSPECIALISTS

“[The CAAI supplemental] fundinghas allowed us to increase thenumber of fellows that we train,which is the mission of DBPprograms—to train… We’ll be ableto have 4 or 5 fellows this July, upfrom our usual 2 or 3. This is a verybig step.”



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residents, such as pediatric residents, but they may also include other practitioners from within thehospital or from the surrounding community.

The number of medium-term DBP trainees has remained fairly constant over the grant period(Figure IV.2). Most medium-term trainees are medical residents, whose numbers tend to remainrelatively constant from year to year. However, many of the programs also used the autism supplement toincrease the amount of ASD-related didactic and clinical training these residents receive; this will bediscussed further in the section below. These efforts thereby increase the number of residents gainingskills in autism screening and diagnosis, even when the number of residents overall does not change as aresult of the funding.

229247

232

0

50

100

150

200

250

300

2008–09 2009–10 2010–11

Num

berof

Medium-Term

Trainees

Academic Year

FIGURE IV.2NUMBER OF MEDIUM-TERM TRAINEES, BY YEAR

Source: NIRS data

The DBP programs have also targeted nursepractitioners for autism training. The DBP program at BostonUniversity, for example, used the autism supplement tosupport a general family nurse practitioner at its institution,adding her to its clinical staff. This practitioner spent time asa trainee learning more about the ASD evaluation process,and over time, her role has advanced from observation toconducting supervised evaluations. She is now able toconduct the evaluations largely on her own, whilesubsequently presenting cases to the DBP physicians. Theprogram director reported that this trainee has increased theprogram’s capacity to serve the needs of children and theirfamilies, because “she’s able to take over the management ofa lot of our long-term children with autism.”

In some cases, medium-term trainees come from thecommunity outside the program’s home institution. The DBPprogram at Boston University, for example, partnered withcommunity health centers in Boston to create a DBP “mini-fellowship” using the CAAI supplemental funds. These

NURSE PRACTITIONERS:THE WAVE OF THE FUTURE INADDRESSING ASD

“I think our DBP’s nurse practitionerinitiative… has been incrediblyimportant. I think nursepractitioners are really the wave ofthe future… around developmentalissues... They just take more timeand develop stronger, continuousrelationships with families. So Ithink that the more training andcapacity-building in nursepractitioners that we can [do], thebetter.”

– DBP program director,Boston University


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“mini-fellows,” several of whom are nurse practitioners, received 8 hours per week of training for 3months, falling into the category of medium-term trainees. Their training included formal clinical ADOS6

training; weekly clinic sessions, evaluating patients with direct supervision by the DBP attendingphysician; weekly afternoon didactic sessions with DBP fellows; and weekly one-on-one case and topicreview sessions with the DBP attending physician.

These “mini-fellowships” have had an immediateimpact on health services delivery, because all of theparticipating practitioners came from community healthcenters that primarily target underserved populations,including Spanish- and Vietnamese-speaking communities.Since completing the program, these practitioners can nowprovide an initial diagnosis for children to facilitateimmediate initiation of intensive early intervention prior toevaluation by a specialist. As the program director described,

“This has a really significant impact on thecommunity… the addition of a clinician at thiscommunity health center who is proficient in thescreening and diagnostic process really helps easethe bottleneck of children and families waiting to seea diagnostic specialist.”

Further, these mini-fellowships have established bridgesbetween the DBP program and underserved communities tobetter facilitate future partnerships in meeting the needs ofthese underserved populations.

3. Increases in the Number of Short-Term Trainees

Trainees receiving fewer than 40 hours of training are classified as short-term trainees. Thesemay be medical students on a pediatric clerkship; parents; or a wide variety of currently practicingprofessionals, such as pediatricians, educators, and childcare workers. The DBP programs have used theCAAI supplement to increase the number of short-term trainees reached by their CE and other trainingactivities. These activities, and their outcomes, are reported in Chapter V, which addresses the grantees’activities to build awareness of ASD among a broad array of audiences.

B. ENHANCED FOCUS ON AUTISM IN THE DIDACTIC AND CLINICALTRAINING

In addition to increasing the number of trainees recruited and supported, the DBP programs usedthe CAAI funds to provide trainees with a more intensive, comprehensive exposure to ASD than theywould have received in the absence of the CAAI grants. As the DBP program director at Albert EinsteinCollege of Medicine explained, “The fact that every resident leaves here knowing how to detect autism isa huge departure from what happened previously.”

6 Autism Diagnostic Observation Schedule

BUILDING BRIDGES INTOUNDERSERVED COMMUNITIES

“The mini-fellowship program [hasbeen]… incredibly importantbecause we have now partners inprimary care who know more aboutwhat we do and tell their partners,if they’re a neighborhood healthcenter or a practice, about what wedo. They’re based in all the[underserved] parts of the city thatwe’re not in directly.”

– DBP program director at BostonUniversity, on what is the biggest

contribution of the CAAI supplement


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This enhanced focus involves infusing both thedidactic and experiential components with more autismcontent. Didactic instruction includes courses and seminarsfocusing on such topics as valid and reliable ASD screeningand diagnostic tools, and health policy and advocacy coursesthat highlight the larger, systems-level context of ASD.Experiential learning occurs both in clinics and in thecommunity. Trainees engage in a wide variety of activities,such as conducting diagnostic evaluations in hospital clinics,observing or consulting on cases in local schools, attendingmeetings of national research and advocacy associations, andvisiting State legislatures.

With the help of the CAAI funding, the programs enhanced the autism training in three mainways:

Allotting more faculty time for training purposesSupporting faculty and fellow time in the development of an autism training curriculumExpanding the clinical opportunities available to trainees

Each of these activities is described briefly below.

1. Increased Faculty Time for Teaching

One of the main ways the CAAI supplements were used was to free up faculty and fellow time toparticipate in training, research, and community-based activities. With regard to training, the CAAIsupplements provided the financial support to enable faculty to spend more time teaching fellows andtrainees in the clinics. The DBP program director at the Children’s Hospital of Philadelphia describedhow this use of the funding affected the training program for residents:

“I think that’s the biggest contribution [of the CAAI supplement]. We had an autismdiagnostic clinic before we had the training, and we allowed the residents to come andobserve. But that’s essentially all that we had time to do is let them observe. Whateverthey could pick up when they were observing, they picked up, but we didn’t really havetime to allow someone to do any more than briefly orient them. Now we have people whocan discuss with them what is going on during an ADOS [diagnostic assessment] or aninterview, or what the speech therapist is looking for. So I think we can provide a lotmore context now to help them understand what we’re doing and why.”

In this way, the grant programs are providing a deeper and more intensive training experience in ASDthan was possible prior to the supplemental grant awards.

2. Supporting the Development of an Autism Training Curriculum

The CAAI funds also provided additional funding to leverage in support of a collaborative projectwith the CDC to develop a standardized training curriculum around ASD for medical residents, entitled“Autism Case Training: A Developmental-Behavioral Pediatrics Curriculum.” This curriculum iscomprised of seven case study modules and was designed to teach physicians-in-training about screening,diagnosis, and management of children with ASD through real-life scenarios. The modules cover topicsranging from early warning signs of autism, to making an autism diagnosis, to treatments for autism, and

ENHANCING THE FOCUS ONAUTISM

“[The CAAI supplemental grant]really has put autism at theforefront of our training efforts.”

– DBP program director,Albert Einstein College of Medicine


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each module comes with a facilitator guide, aPowerPoint presentation file with curriculum content,and accompanying videos to supplement the lessons.

DBP faculty and fellows played a primary rolein the development of the case modules, and programdirectors reported that this was an extremely valuablelearning experience for the fellows involved. Not onlydid fellows augment their training experiencepertaining to autism screening, diagnosis, andtreatment by participating in the development of thecurriculum modules, but they also benefited frommentoring relationships developed with various DBPfaculty, often co-authoring a module with a DBPfaculty member from an institution other than theirown.

3. Enhanced Clinical Opportunities

In addition to freeing up faculty time to engagein more teaching, the grantees used the CAAIsupplements to enhance the ASD-focused clinicaltraining opportunities available to fellows and traineesin three main ways:

Offering enhanced training in the use ofscreening and diagnostic toolsExpanding clinical opportunities in thecommunityProviding family-based experiences fortrainees

Each of these is described briefly below.

a. Enhanced Training on Screening and Diagnostic Tools

Several programs reported increasing the training available to both trainees and faculty with theaddition of the CAAI funds. Some examples follow.

M-CHAT Training. The grantee at the Albert Einstein College of Medicine used the funds toensure that all pediatric residents in its hospital are trained in the use of the M-CHAT,7 one of the mostcommonly used autism screening tools. Residents and other medium-term trainees also had moreopportunities to observe evaluations conducted with the ADOS, a common diagnostic tool. Suchobservations increase the trainees’ familiarity with the ASD diagnostic criteria and process.

ADOS Training. Several programs reported expanding the training provided on the ADOSdiagnostic tool for both fellows and faculty. Programs used the CAAI funds to support ADOS trainingfor faculty and fellows, including purchases of equipment and materials that enhance training, such as a

7 Modified Checklist for Autism in Toddlers

The CAAI supplements provided additionalfunding to leverage in support of acollaborative project with CDC to developthe Autism Case Training (ACT) Curriculum.The curriculum has been endorsed by theAmerican Academy of Pediatrics and theSociety for Developmental and BehavioralPediatrics and is now freely available fordownload from the CDC Web site athttp://www.cdc.gov/ncbddd/actearly/ACT/class.html#.


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camera and the standard forms used in the evaluation. Inaddition to increasing the numbers of professionals skilled inconducting assessments using this tool, in some cases, thesetrainings allowed trainees to become certified ADOS trainersso that they could train others in the future. As the programdirector at Yale University described, the trainings add“continuity and sustainability in case there isn’t funding forus to bring in an outside trainer every year.” Thiscontribution of the CAAI funds not only expands the pipelineof professionals skilled in diagnosis, but also invests in DBPprograms’ future training capacity.

b. Expanded Clinical Opportunities in theCommunity

With the support of the CAAI supplements, the DBPprograms also expanded community-based clinical-trainingopportunities. Often, these expanded opportunities resultedfrom the increased capacity that stems from having moretrainees. As the DBP program director at Yale Universityexplained, “The truth of the matter is, if we have morefellows, we can broaden the scope of what we do… When wehave funds to have more fellows that means we also have theability to do these community-based enrichment activities.”For example:

School Health Consultations. Fellows at YaleUniversity’s DBP program participate in school healthconsultations in a school for children with autism and othercomplex developmental disabilities. These fellows help theschool to get their health policies and emergency plans inplace and they train teachers in topics such as medication andpsychopharmacology.

Classroom Observations. Fellows and trainees atother DBP programs have similarly participated in classroomobservations in schools and residential facilities for childrenwith ASD and have provided mental health consultations at

schools and Head Start programs that may have children with ASD.

c. Enhanced Family-Based Experiences for Trainees

Two sites reported using the CAAI funds to expand or help establish training programs that allowtrainees to learn firsthand from families about their life experiences with a child with ASD.

Expanding the “Project Doc” Program. The DBP program at Albert Einstein College ofMedicine used the funds to expand its existing program entitled “Project Doc” to include families ofchildren with ASD. This program trains parents of children with various chronic conditions to becometeaching faculty to residents, and gives residents a chance to observe children in their homes. Throughthis experience, the residents gain a perspective on ASD that they cannot obtain in the clinic.

EARLY SIGNS OF THE IMPACT OFTRAINING ON SCREENING ANDDIAGNOSIS SKILLS AND PRACTICES

While it may be too early to detectimpact of the enhanced training onearly screening, diagnosis, andintervention, some DBP programdirectors report early signs ofimproved practice. For example,the program director at EinsteinCollege of Medicine’s DBP programreported:

Improved knowledge levels andreferrals from residents as aresult of the enhanced training:“We debrief our residentsbefore and after—we givethem a pre-test before anddebrief them after and use apost-test. They almostuniformly say they’re moreaware of these issues now.”

Improved detection of milderforms of autism in affectedchildren.

An increase in calls fromresidents at the clinic to discusschildren about which they areconcerned: “I can definitely seeit changes their practice andheightens their awarenessabout these issues.”


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Launching the “Day in the Life” Program. The DBP grantee at Yale University leveraged CAAIfunds with other funds to launch its “Day in the Life” program. Similar to the program described above,families volunteer to host residents during 2 half-days per month. During the first half-day, the residentsobserve the child in school to get a sense of the educational interventions for the child. During the secondhalf-day, the residents interview the family in detail to get an idea of what it is like to live with ASD andhow it impacts family life.

C. ENHANCED ADVOCACY, COUNSELING, AND COORDINATION OF CARE

Beyond training fellows to simply diagnosedevelopmental disabilities such as ASD in children, the DBPprograms train fellows to provide advocacy, counseling, andcoordination of care for these children and families. Thiscritical component of the DBP programs’ mission occurs onboth the micro and macro levels, coordinating care for eachindividual child in their clinics as well as promoting advocacyfor all children with ASD at a larger systems level. Thissection describes this aspect of the fellows’ training and howthe supplemental CAAI funds have provided additional timeand opportunities for these activities.

1. Advocacy, Counseling, and Coordinationof Care at the Micro Level

At the micro level, DBP programs actively work tomanage the care of children with ASD and to build bridgesbetween individual families and services. The DBP programdirector at Case Western Reserve University described this

role: “We are very cognizant that just sending families out the door with a diagnosis of autism is not ashelpful as sending them home with a whole bunch of things they can do at home and helping them toconnect with the community.” Thus, in addition to providing a diagnosis, the DBP programs work toprovide comprehensive support to families following a confirmed ASD diagnosis. For example, theyconnect the families with early intervention services, schools for children with ASD, advocacyorganizations, and parent and sibling support groups; they refer families for medical and genetic testingand connect them with resources for sleep issues, vision and hearing testing, and recreation services; andthey provide information on topics ranging from safety to how to work with insurance companies.

2. Advocacy, Counseling, and Coordination of Care at the Macro Level

The DBP programs are also concerned withadvocacy, counseling, and coordination of care at the systemslevel. To this end, they participate in State and nationaladvocacy and legislative efforts; meetings of national andregional professional associations and committees, such asthe American Academy of Pediatrics (AAP); and local, State,and regional task forces addressing ASD. The programsencourage the DBP fellows and trainees to understand thebroader context of ASD and how these processes work at thesystems level. They also address systems-level advocacy

BUILDING BRIDGES BETWEENFAMILIES AND SERVICES

“DBP is synonymous withcoordination of care.”


THE BOTTOM LINE:THE CAAI SUPPLEMENT HAS LED TOMORE FAMILIES SERVED

The contribution of the CAAIsupplemental funds to the trainingactivities of the DBP programs hasincreased the programs’ capacity,which directly leads to morefamilies being served. As theprogram director at Yale Universitydescribed, “[As a result of the CAAIsupplement], we can see morepatients. When we have fellows,we can… see more families and wecan take care of more kids. That’sthe biggest thing. It… helps toincrease our capacity.”


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issues by incorporating into the curriculum topics such as public policy and financing of health care,Federal and State programs for children with disabilities, and ethnic disparities in health care.

The CAAI supplement worked to free up faculty and fellow time to participate in these kinds ofactivities. One example of this is how the DBP program at Yale University was actively involved instatewide advocacy and collaboration as a result of participating in its State’s Act Early Summit. In thiscase, faculty from the DBP program participated in a working group that brought together representativesfrom 20 different agencies around the State of Connecticut. The working group resolved to develop a setof best-practices guidelines for the diagnosis of children with ASD in Connecticut. The group launchedthe project with a legislative forum attended by a number of legislators, and leveraged funding for theproject from other sources, including the Association of Maternal & Child Health Programs (AMCHP)and Connecticut’s Department of Developmental Services. The guidelines are still under development,but the final product will be professionally printed and distributed in a number of different waysthroughout the State upon completion. The CAAI funding enabled the participation of faculty andfellows in this project, and as the program director described, “The fellows were really able to be part ofthis larger advocacy picture looking at change in the State of Connecticut.” The director reported that,together with training, the support for participating in these efforts was one of the biggest contributions ofthe CAAI funding to the program.


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CHAPTER V: ENHANCING RESEARCH ON ASD AND TRANSLATINGRESEARCH INTO PRACTICE

Research constitutes a critical means of advancing thefield of DBP. In order to grow the evidence base for effectivescreening, diagnostic, and treatment practices relating to ASDand translate research into practice, researchers in the field mustconduct rigorous research studies in these areas and disseminatefindings. Advancing the field of DBP is an integral part of theprograms’ mission. To this end, conducting sound research is acore principle of leadership that they aim to instill in theirtrainees, particularly the long-term fellows training to be DBPspecialists.

The CAAI supplemental grants enhanced the DBPprograms’ ASD research capabilities through the provision ofcritical salary support for faculty and trainee time spent inresearch activities. These contributions primarily support theDBP objective of supporting research on ASD and translatingresearch into practice.

Section A of this chapter provides an overview of the ways in which the CAAI supplementalgrants have affected the DBP grantees’ research activities. Section B discusses the ways in which theDBP programs train fellows to be the next generation of leaders in DBP research related to ASD, andSection C describes the ways in which the DBP programs work to translate research into practice.

A. CAAI SUPPORT FOR RESEARCH ACTIVITIES

The CAAI additional grant funds had substantialindirect influences on DBP research activities around autism.Three of these contributions are discussed below.

The primary contribution of the CAAI supplementshas been to provide salary support for faculty and fellows toparticipate in cutting-edge research studies related to ASD.By doing this, the supplemental funds not only support theresearch activities of the DBP programs, but also enhance thetraining experiences for the fellows. This research trainingcontributes to the development of a new generation of leadersin DBP research in ASD.

Second, the CAAI supplemental funds likely allowedthe DBP programs to increase their research focus on autism.In a context of competing priorities and limited resources, theCAAI grants helped to prioritize autism in the programs’existing training and other activities, likely resulting in agreater emphasis on autism-related research as well.

PRIORITIZING AUTISM IN DBPRESEARCH ACTIVITIES

“The important part about the[CAAI] supplemental funds is thatwhen opportunities come alongto highlight autism or to workwith other people around issuesaround autism, that we have thetime to do it as opposed to nothaving the time to do it.”

– DBP program director at CaseWestern Reserve University, onthe indirect impact of the CAAI

funds on research activities

THE CAAI SUPPLEMENTAL GRANTSSUPPORT THE ASD-RELATEDRESEARCH EFFORTS AND ENHANCETHE TRAINING EXPERIENCE OFFELLOWS AND TRAINEES

“…Having the support allows us to,in a sense, buy the trainees’ andfaculty’s time out of direct serviceso that they can do these academicpursuits… That’s a very importantfunction. Otherwise, their trainingwould totally be driven by clinicalload.”

– DBP program director at theEinstein College of Medicine, on the

impact of the CAAI funds onresearch activities


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Last, the CAAI supplements helped foster and maintain research collaborations by providingadditional resources that DBP faculty members can leverage to obtain additional funds for specificcutting-edge research projects. The DBP programs point to a wide variety of sources to provide financialbacking for their research work, ranging from their own institutions to Federal agencies such as NIH andCDC to private organizations such as AUCD. Often, research projects are funded from multiple sourcesand occur in collaboration with other departments and institutions. A few programs, for example, areengaged in research as part of the Autism Treatment Network (ATN), which receives private funding aswell as Federal funding as part of the CAAI Autism Intervention Research Network on Physical Health(AIR-P). The DBP programs also collaborate extensively with each other on research, as part of theMCHB-funded Developmental-Behavioral Pediatrics Research Network (DBPNet).

B. DEVELOPING A NEW COHORT OF ASDRESEARCHERS

Through its support of trainees, the CAAIsupplements are helping to develop a new cohort of ASDresearchers. Although the DBP programs vary in the degreeto which their faculty members are conducting ongoingresearch studies outside of their clinical practice, research hasalways comprised a core component of the DBP trainingcurriculum, particularly for long-term trainees. This sectiondiscusses how fellows’ research skills are honed through 1)individual research projects and 2) involvement in faculty-ledresearch. Many of these research activities focus on ASD,and the CAAI funds likely contributed to an increase in thatfocus. These experiences during the fellowship allow thefellows to contribute to developing the current evidence basearound ASD as well as to hone their skills for conductingongoing ASD research in the future.

1. Fellow Research Projects

DBP fellows are expected to conceptualize, conduct,present, and publish a research study during their fellowships.The CAAI supplement has contributed to these projects byproviding salary support, which allows fellows to spend moretime in research activities. The projects allow the fellows toapply what they have learned to formulate research questions,develop a testable hypothesis, select an appropriate andfeasible research design, search for funding sources, write aninstitutional review board (IRB) proposal, and implementtheir proposal to collect, analyze, and interpret data.

Once each fellow has chosen a topic, fellows aretypically assigned research mentors to support them in theirefforts to conceptualize their research projects. Under theguidance of this mentor, fellows prepare written proposals fortheir projects to be approved by the program before executingtheir analyses. As highlighted in the text box on this page,many of the fellows’ research projects address issues related

DBP FELLOWS’ RESEARCHHIGHLIGHTS IMPORTANT ISSUESSURROUNDING ASD

Increasingly, DBP fellows’ researchprojects highlight ASD. As the DBPprogram director at the Children’sHospital of Philadelphia explained,“Five years ago, it was rare for afellow to do research on autism.Now it’s [up to] 50 percent.” Someresearch project topics related toASD include the following:

A paper describing whetherthere are differences in thepresentation of children withASD by race that might helpexplain disparities in timing ofdiagnosis.

A secondary analysis of a large-scale dataset looking at therelationships between parentalstress and positive social skillsof children with ASD.

An assessment of the reliabilityof screening methods using aninnovative screening practiceserving underservedpopulations. In contrast toconducting a screening in theregular waiting room, theintervention provides aseparate, child-friendlyscreening room with afacilitator for assistance.


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to ASD screening, diagnosis, and treatment.

Presenting and publishing are expected parts of theprogram. Case Western Reserve University DBP programfellows, for example, are expected to present their research inat least two forums. Fellows hone their presentation skills byfirst presenting their work in progress at internal researchseminars, and then presenting their completed research atscientific conferences, such as the meetings of the Society forDevelopmental and Behavioral Pediatrics (SDBP) and AAP,as well as other venues such as the annual meeting of MCHB-Sponsored Fellowship Programs. As with any otheracademic research, publishing their research studies in a peer-reviewed journal is the end goal of the process, and many ofthe DBP programs have a very good track record for gettingtheir fellows (and faculty) published.

2. Trainee Involvement in Faculty-LedResearch

In addition to conducting their own individualresearch projects, fellows are also actively involved infaculty-led research, which often focuses on issuessurrounding ASD. As the DBP program director at AlbertEinstein College of Medicine described, “Most of our[research faculty]… are productive in projects that deal withthe autism spectrum.” As with the fellow research projects,the CAAI supplement has contributed to this research byallowing faculty and fellows to invest more time in research.

CAAI DBP grantees reported 29 peer-reviewed publicationsrelated to ASD and other DD in 2009, 36 in 2010, and 48 in2011, an increase of 66 percent from the start of the grantperiod (Figure V.2). While some programs place a greateremphasis on research than do others, all six grantees reportedpublications since receiving the grants. DBP grantees alsodevelop and disseminate other educational products that arenot peer reviewed. The number of these products alsoincreased over the grant period, from 27 in 2009 to 41 in2011 (Figure V.1).

CUTTING-EDGE RESEARCH ONAUTISM

The CAAI supplemental funds havecontributed to the development ofmany recent publications on autismby DBP faculty members. Aselection of topics includes thefollowing:

Surveillance and screening forASD in primary careNeural synchrony as a signatureof ASD riskGenetic testing for patientswith ASDBiomarkers for languageimpairment in autismEvaluation, diagnosis, andtreatment of gastrointestinaldisorders in individuals withASDSocioeconomic inequality in theprevalence of ASDSex differences in theevaluation and diagnosis of ASDamong childrenFeasibility and efficacy ofroutine developmentalscreening in urban primary caresettingsNeuroimaging and biomarkersfor autismSleep behaviors and sleepquality in children with ASDMultisensory processing inchildren with ASD


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29 27

36

4348

41

0

10

20

30

40

50

60

Peer-reviewed journal articles Other educational products (notpeer reviewed)

Num

berof

EducationalProducts

Educational Products

FIGURE V.1NUMBER OF EDUCATIONAL PRODUCTS

RELATED TO ASD AND OTHER DD, BY YEAR

2008–09

2009–10

2010–11

Source: NIRS data

A list of selected research presentations related to ASD that have been affected either directly orindirectly by the CAAI supplemental funds is provided in Appendix E, while a similar list of selectedASD-related publications supported directly or indirectly by the supplement is provided in Appendix F.These research studies highlight a wide range of topics related to autism, including genetic factors relatedto ASD; the link between autism and other conditions, such as macrocephaly, Down syndrome, andautoimmune problems; and the use of various interventions for children with ASD and their families,such as complementary and alternative medicine, and intervention video games to teach facial-recognitionskills. It should be noted that while these lists are intended to show the breadth of research on ASD thatis influenced by the CAAI grants, they are by no means exhaustive lists of research on ASD beingconducted by the DBP programs.

C. TRANSLATING ASD RESEARCH INTO PRACTICE

Translating research into practice is a priority of theDBP programs and one of their primary objectives under theCAAI. They aim not only to support the development ofcutting-edge research on ASD, but also to ensure that thefindings of that research reach providers who can implementthem in practice. The CAAI supplements contributed to theseactivities by supporting the DBP programs in:

Conducting translational researchDisseminating evidence-based research

This section discusses the DBP programs’ activities in eachof these areas, highlighting activities related to ASD.

DBP PROGRAMS ENSURE THATFACULTY AND TRAINEES STAYABREAST OF THE LATEST RESEARCH

“We make a real effort to keep upwith the literature, do journal clubs,grand rounds, etc. to repeatedlycome back to what’s new inmedicine, especially arounddevelopmental-behavioral issues.”

– DBP program director,Albert Einstein College of Medicine


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1. Translational Research

Translational research aims to translate scientific discoveries into practical application for real-life primary and developmental-behavioral healthcare settings, aptly summarized as the “bench tobedside” approach. The DBP programs emphasize this type of research. Many of these efforts will bediscussed in more detail in Chapter VII, which focuses on the programs’ efforts to improve systems ofcare for children with ASD and their families. Due to the applied nature of the research, these efforts inturn contribute to improved services provided to children and families in the short term rather than furtherdown the road. Below, we describe some of the research and evaluation efforts surrounding thoseactivities.

As with other research activities, the CAAI supplemental funds have contributed to translationalresearch activities by freeing up faculty and fellow time to participate in research studies. These researchprojects examine efforts to:

Improve screening and diagnostic tools and practices to developImplement evidence-based interventions for children with ASD

Each of these is described below.

a. Translational Research on Screening and Diagnostic Tools and Practices for ASD

Faculty and fellows at some DBP programs conduct research on the development and validationof screening and diagnostic tools. All six grantee sites reported faculty or fellows participating in thisactivity during at least 1 year of the grant period. The number of faculty or fellows participatingincreased 30 percent, from 10 in 2008–09 to 13 in 2010–11 (Figure V.2).

10

17

13

02468101214161820

2008–09 2009–10 2010–11Num

berof

Faculty/FellowsParticipating

Academic Year

FIGURE V.2NUMBER OF FACULTY AND FELLOWS PARTICIPATING INRESEARCH ON THE DEVELOPMENT AND VALIDATION OF

SCREENING AND DIAGNOSTIC TOOLS, BY YEAR

Source: NIRS data

Some of this research examines the testing and evaluation of different scoring instruments.Several examples include the following.


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Children’s Hospital of Boston. DBP researchers haveexamined whether a general developmental screening tool isadequate to identify children with ASD or whether an autism-specific screening tool is needed. This research confirmedthat general developmental screening tools and an autism-specific tool identify different children, and that bothscreeners should be used. Results further showed that thesescreening tools could be incorporated into practice withoutadding time to routine wellness visits.

Yale University. Researchers are testing thereliability of screening tools, conducting two iterations of thesame screening tool. This research is still underway, butpreliminary results suggest a high degree of variabilitybetween two iterations of the same screening tool.

Children’s Hospital of Philadelphia. Another area ofresearch related to screening tools is a project in whichresearchers are incorporating screening tools into electronichealth records in ways that are relatively easy for physiciansto use. These efforts affect 30 primary care centers that areaffiliated with the hospital and that share one electronic healthrecord system. The project aims to increase and facilitate thescreening practices of these primary care centers. While thedata are not yet final, preliminary results suggest that simplymaking the screening tools available via the electronic medical record is not sufficient to motivatephysicians to perform more screenings.

DBP grantees also have researchers evaluating different methods of implementing screening anddiagnostic processes into practice. Several DBP grantees, for example, have implemented “Fast Track”clinics to prioritize younger children for diagnostic services, once a child has screened positive for ASDor has for some other reason generated a strong suspicion for ASD. These projects typically have anevaluation component, since, as one DBP program director pointed out, “only through data collection andanalysis will health care systems perceive the potential benefits of a new structure.” Results from the“Fast Track” program evaluation at the Children’s Hospital of Boston indicate that traditionally long waittimes for diagnoses were reduced for the young children participating: the wait time for diagnosingchildren younger than age 2 with strong suspicions of ASD has been reduced from 6 months or longer towithin 2 months. These programmatic findings have been presented nationally at the meetings of thePediatric Academic Societies (PAS) and SDBP so that the paradigm can be adopted across the country.Additional examples of evaluations of screening and diagnostic processes follow:

Albert Einstein College of Medicine and Children’s Hospital of Boston. These DBP programsare working to implement routine developmental screening, including screening for ASD, as a standardcomponent of primary care and are conducting evaluations of those efforts. This research has shown thatroutine screening increases the identification of children with ASD who otherwise would have beenmissed without adding burden to pediatric wellness visits. Even in a primary-care practice serving aninner-city, highly underserved population, routine screenings “didn’t add a minute to the pediatric visits,and the families were much happier,” according to the DBP program director at the Children’s Hospitalof Boston. These results were published recently in the journal Clinical Pediatrics.

AWARD-WINNING RESEARCH BYDBP FELLOWS

A DBP fellow at Yale University wasrecently awarded the AcademicPediatric Association’s YoungInvestigator Award for her projectexamining the reliability of ASD andDD screening tools. This awardincludes a $15,000 grant. Asdescribed by the DBP programdirector, “[It gave her] practicewriting grants. She’s beensuccessfully funded. She’s going tohave mentors from around thecountry working with her on this.It’s really wonderful.”

This success was made possible inpart by the CAAI supplementalgrant, which freed up both thefaculty’s and the fellow’s time towork on the project.


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Yale University. DBP researchers are currently evaluating the impact of an enhanced screeningsetting on screening outcomes. In this study, they revamped the screening program in their pediatricclinic so that some families are screened in the waiting room prior to wellness visits, while others arescreened in a separate, child-friendly space with the assistance of a facilitator when needed. Results fromthis study are not yet available, as researchers are still in the process of analyzing the data.

Finally, some of the studies partially supported by the CAAI supplements have, in turn, madeother research opportunities possible, often in collaboration with other groups and through leveraging ofthe funds. For example, the “Autism Fast Track” pilot program at the Children’s Hospital of Boston hasmade possible a separate study of high-risk infant siblings of children with ASD. Researchers study theinfants at 3, 6, and 9 months, looking for early markers of ASD to see if they can potentially diagnosechildren even before the symptoms manifest themselves. The program director explained that it would beunethical to identify concern for ASD in the infants and then have them wait 3 to 6 months to be seenclinically. This infant sibling study is thus made possible by the CAAI-supported “Autism Fast Track”diagnostic clinic by providing the study a clinic to which researchers can quickly refer the high-risk infantsiblings with suspicion of ASD.

b. Translational Research on Evidence-Based Interventions for Children With ASD

Evidence-based interventions are the focus of another area of translational research activities forthe DBP programs. For example, with salary support provided by the CAAI supplement, the DBPprogram at the Children’s Hospital of Boston has led the way in the development of “social stories” toimprove treatment approaches to children with ASD. These stories familiarize the child in advance withwhat to expect at a medical visit. So far, the program has successfully developed and implemented atoolkit using these stories to assist children with ASD in having their blood drawn, and is currentlyworking on extending the concept to other types of medical visits, including dental visits.

The idea of using these “social stories” originated when, in the process of doing a research studyfor children with autism, the program discovered that of all the children who signed up to do the study, 14percent refused to have their blood drawn and had to drop out of the study. Further, this number waslikely an underestimate, since others may have initially refused to participate due to parental anxietyabout having their child’s blood drawn. As the DBP program director explained, “One of the problemskids with autism have is they get very anxious about things they don’t understand. They like things to bethe same. They have a need for sameness, that’s one of the symptoms. And so going to a place to haveyour blood drawn, it’s not that they’re afraid it’s going to hurt, it’s they have no idea what this place is orwhat’s going to happen.”

To address this anxiety, the program developed a teaching packet for parents that included asocial story involving a child having their blood drawn to familiarize the child with what happens duringa blood draw and what they should expect. The packet included a pretend syringe, a tourniquet, and anadhesive bandage, and it directed parents how to prepare their children by practicing.

The blood-draw toolkit proved to be a great success. Many of the children brought theirtourniquet or their pretend syringe when they came to have their blood drawn. After the programimplemented the toolkit for parents, the failure rate for the study dropped from 14 percent to 4 percent.Furthermore, the program was able to expand the project using leveraged funding: the program received a$50,000 grant internally from the hospital’s technology-development unit to produce the toolkit on alarger scale to make it more broadly available. As of summer 2011, the product is nearly ready to bereleased.


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Given the success of the toolkit and story approach, the DBP program is further extending theproject to ease the delivery of dental care to children with ASD and their families. Program staff arecurrently working with the program institution’s dental department on a project to develop a story tointroduce the children to some of the equipment used at the dentist—for example, how a tongue depressoris used to look in the mouth. The program is also looking to expand the use of social stories within itsown practice, with plans to provide a story about visiting the doctor to families prior to their first visit.

2. Dissemination of Evidence-Based Research

Research must first be disseminated if it is tobe translated into practice. Dissemination of the DBPprograms’ evidence-based research occurs primarilythrough:

Presentations at various venuesPublications in peer-reviewed journals andtextbooksTraining-related activities and materials


a. Presentations

DBP faculty and fellows present the findingsof their research in a variety of venues. Work inprogress is regularly presented at internal conferences,such as ongoing research conferences or seminarsinvolving faculty members and all DBP fellows. Otherinternal presentation venues include grand roundspresentations, presentations before the LEND(Leadership Education in NeurodevelopmentalDisabilities) programs, and department-widepresentations. In their final year, fellows present theircompleted research projects at the annual meeting ofthe MCHB-sponsored Leadership Education inDevelopmental-Behavioral Pediatrics TrainingPrograms. Both fellows and faculty also present theirwork at regional and national meetings of relevantprofessional associations, such as SDBP, PAS, AAP,and the International Society for Autism Research(INSAR). These presentations at scientific conferencesare often a stepping-stone toward publication byproviding a venue to obtain critical feedback toimprove the research.

A list of selected research presentations related to ASD that have been impacted in some way,directly or indirectly, by the CAAI supplemental funds is provided in Appendix E. These research studieshighlight a wide range of topics related to autism, including genetic factors related to ASD; the linkbetween autism and other conditions, such as macrocephaly, Down syndrome, and autoimmune problems;

DISSEMINATION OF EVIDENCE-BASEDRESEARCH IN PEER-REVIEWEDPUBLICATIONS

Presenting and publishing researchconstitute expected components of theDBP fellowship program. DBP faculty andfellows publish the findings of their cutting-edge research in a variety of peer-reviewedpublications, including Pediatrics, BiologicalPsychiatry, Clinical Pediatrics, Journal ofDevelopmental and Behavioral Pediatrics,Disability and Health Journal, AutismResearch, the European Journal ofNeuroscience, and others.


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and the use of various interventions for children with ASD and their families, such as complementary andalternative medicine, and intervention video games to teach facial-recognition skills.

b. Publications

Publication in peer-reviewed journal and academic publications is the goal for most or allresearch projects, and many of the programs have a strong track record of getting their fellows published.Journals in which faculty and fellows have recently published ASD-related work include Pediatrics,Biological Psychiatry, Clinical Pediatrics, Journal of Developmental and Behavioral Pediatrics, Disabilityand Health Journal, Autism Research, and the European Journal of Neuroscience, among others. DBPfaculty members have also contributed to peer-reviewed textbooks and other reference books. A list ofselected research publications related to ASD that have been impacted in some way, directly or indirectly,by the CAAI supplemental funds is provided in Appendix F.

c. Training and Educational Resource Materials

The DBP programs also host training events that reach a broad range of professionals, includingpediatricians and other primary care providers, early interventionists, educators, social workers, andjuvenile justice professionals. The DBP programs reach these audiences through a variety of activitiessuch as hosting conferences, continuing-education events, and other educational seminars and events, aswell as by disseminating educational resource materials on Web sites, through electronic teachingmodules, and via newsletters. Many of these actions have been directly supported by the CAAIsupplemental grants. These activities help to translate research into practice by delivering cutting-edgeknowledge related to ASD directly into the hands of those who can use it. These activities aimed at awide range of professionals are discussed in more detail in Chapter VI.


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CHAPTER VI: INCREASING AWARENESS OF ASD

One of the primary objectives of the CAAI is to increase awareness of ASD as a means ofpromoting early screening, diagnostic evaluation, and intervention. Despite increased attention to ASD,gaps in awareness persist among pediatricians, parents, educators and the broader community. Toincrease awareness about the identification and treatment of ASD, the DBP training programs:

Provide training and informational eventsProduce and disseminate publications and various educational resource materials on current,evidence-based information on ASDParticipate in broader autism awareness campaigns with State and regional partners

Their awareness efforts target diverse audiences, including primary care providers, allied healthprofessionals, early interventionists, educators, childcare providers, and families. These activitiescontribute primarily to the DBP objective of increasing public and provider awareness of ASD. Inaddition, they play a critical role in training professionals to screen and diagnose and in translatingresearch into practice.

The CAAI supplemental funds contributed toincreasing awareness around ASD primarily indirectly byproviding salary support to faculty and trainees to participatein nonclinical activities, such as public-awareness campaigns,conducting training events, and developing resource guidesfor families of newly diagnosed children. Without thefinancial support from the CAAI supplemental grants, theseactivities would be difficult to support in the context ofdepartments struggling with limited funding.

One primary exception to this was the direct use offunds by the DBP program at the Children’s Hospital ofBoston. This grantee used the CAAI supplemental funds totrain hundreds of primary care providers, daycare providers,and child welfare professionals statewide on the identificationand screening of ASD. These efforts came at a criticaltime—just after a State law was passed mandating screening for ASD and other DD. As such, theseefforts comprised one of the most successful examples of the CAAI contributing to increased awarenessof ASD.

Section A of this chapter discusses the ways in which the DBP programs are increasingawareness of issues related to ASD among the audience of health professionals, including primary careproviders and allied health professionals. Section B discusses awareness-building activities reaching thewider community, including nonmedical professionals, families, and the public.

THE STATEWIDE IMPACT OF CAAI-FUNDED TRAININGS ON ASD

“When we’ve reached this manypediatricians, childcare workers,and people in the legal profession,who we wouldn’t have reachedotherwise, it’s hard to imagine thatit’s not a huge effect… I think theimpact has been tremendous.”

– DBP program director,Children’s Hospital of Boston


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A. RAISING AWARENESS AMONG HEALTH CARE PROVIDERS

Health care providers constitute a primary audience for the DBP programs’ ASD awareness-building activities and make up a large portion of the DBP programs’ short-term trainees.8 Primary careproviders are a particularly important audience because theyrepresent the frontlines of screening: pediatricians, forexample, may be the only professionals to see young childrenprior to school entry, when interventions focused on ASDmay be most effective. Other allied health professionals aretarget groups as well; these include occupational and physicaltherapists, speech pathologists, and psychologists, who arekey partners in interdisciplinary diagnosis, treatment, and careof children with ASD.

Despite their important role in identifying childrenwith ASD, many health care providers feel ill equipped tomeet the needs of both the children who are showing signs ofdevelopmental delays and the families who have questionsand concerns about ASD. These medical professionals maybe unfamiliar, for example, with how to distinguish signs ofASD from other DD, what screening tools to use and how touse them, and where one can refer families for diagnosticevaluation and treatment. Additionally, despite AAPrecommendations for routine screening, and even Statemandates in some cases, many pediatricians continue to avoidroutine screening due to concerns about how to implement itinto their practice and how to bill for screening services. Thissection discusses the activities in which the DBP grantees areengaged to address these informational needs, including:

Conducting training events for providersDisseminating research and other educational resource materials


1. Conducting Training Events for Providers

Training events comprise the primary means employed by DBP programs to increase health careproviders’ awareness of ASD. The CAAI supplemental funds typically supported these activitiesindirectly by releasing faculty and trainee time from other responsibilities to allow them to participate inthese ASD training events. Additionally, the CAAI supplemental grants may have increased the emphasisof CE activities on autism by prioritizing ASD issues among other possible topics.

The DBP grantees have hosted hundreds of training events related to ASD; the number of CEevents and other educational events increased between 2009–10 and 2010–11 (Figure V1.1).9 CE eventsincreased 15 percent during this period, while the number of non-CE training events nearly doubled

8 Short-term trainees are those who receive less than 30 hours of training related to ASD.

9 These figures include trainings for both health care providers, and nonmedical professionals, who are discussed in the following section. Thesenumbers cannot be disaggregated by type of audience.

INCREASING HEALTH CAREPROVIDERS’ AWARENESS ON THEMICRO LEVEL

Some of the DBP programs’ mostsuccessful efforts to raiseawareness about ASD happen at themicro level surrounding thecoordination of interdisciplinarycare for an individual child. Forevery child they see, they work witha variety of professionals involved inthe care, treatment, and educationof that child, including pediatricians,teachers, and therapists, to talkabout aspects of ASD and how bestto care for and treat the child. Asthe DBP program director at YaleUniversity described this process,“The more people that are trained,the more cross-fertilizationhappens.”


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during these years. These various training events take the form of grand rounds presentations, seminarsand CE events, and conferences. They cover a wide range of topics relating to screening, diagnosis, andtreatment of ASD. Often, these events occur in cooperation with State agencies and professionalorganizations, such as the local, regional, and State chapters of AAP.

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FIGURE VI.1NUMBER OF TRAINING EVENTS

RELATED TO ASD SCREENING, DIAGNOSIS, AND/ORINTERVENTION, BY YEAR

2009–10

2010–11

Training Events

Source: NIRS data

The DBP programs reach thousands of professionals through their ASD-related CE events, manyor most of who are health care providers. The number of health care professionals reached through theseactivities increased by 74 percent between 2009–10 and 2010–11, from 3,160 to 5,512 professionals(Figure V1.2).10 The number of professionals reached through the grantees’ ASD-related non-CE trainingevents increased as well, increasing 13 percent from 2,398 to 2,716.

10These figures include health care providers and nonmedical professionals, who are discussed in the following section. These numbers cannot bedisaggregated by type of audience.


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3,160

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FIGURE VI.2NUMBER OF PROFESSIONALS TRAINED AT TRAINING EVENTS

RELATED TO ASD SCREENING, DIAGNOSIS, AND/ORINTERVENTION, BY YEAR

2009–10

2010–11

Training Events

Source: NIRS data

All DBP grantees reported providing CE and othertraining events that reach a broad base of health professionals.Pediatricians are a particularly common audience targeted bythe DBP programs in their training events, includingphysicians from many disciplines within each grantee’shospital, primary care providers in the grantee’s community,and medical students and residents. Beyond pediatricians,training events have also targeted other health professionalsin the community who work with children, covering suchtopics as early signs and symptoms of ASD; screening anddiagnosis practices; reimbursement procedures; and availableresources for ASD services. A few examples include thefollowing.

ASD Identification and Treatment. The DBPprogram at Yale University hosts a large CE event each yearfor doctors, nurse practitioners and other health professionals.Faculty at the upcoming year’s event will be highlighting autism, including early detection, screening,and medication use and monitoring.

Medical Home Practice for Children With ASD. The DBP program at the Children’s Hospital ofBoston provided a training event for pediatricians across New England on the medical home practice forchildren with autism. This training included topics ranging from routine screening to moving familiesthrough the transition to adult services and care. The training was attended by pediatricians from 73practices, which provide primary care to about 240,000 children. The program reports that severalpractices subsequently incorporated routine autism screening and parent support information into theirpractices. In addition, several practices have written grants with staff at Children’s Hospital of Boston toevaluate the impact of these changes.

ASD Screening and Reimbursement. The DBP program at Case Western Reserve Universityprovided training during a meeting of 85 pediatricians addressing the rationale for screening for ASD, the

THE BROAD REACH OF THE DBPCONTINUING EDUCATIONACTIVITIES

“These trainees at various levelsadvance the health and welfare ofmany thousands of parents andchildren via… patient care… clinicalsupervision, teaching, appliedresearch, and service onprofessional committees andcommunity advisory boards.”

– DBP program,Children’s Hospital of Philadelphia


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epidemiology of ASD, and the chances of missing achild with ASD if they do not screen. Additionally, theprogram presented its research findings showing thatreimbursement for screening is possible, addressing acommon concern of providers regarding screeningimplementation.

Early Identification of ASD in Children in theJuvenile Justice System. The DBP program at theChildren’s Hospital of Boston, in conjunction with theMassachusetts State Department of Public Health, theDepartment of Children and Families, and theDepartment of Mental Health, hosted a statewideconference for health professionals working withchildren in the juvenile justice system and Departmentof Children and Families. The conference focused onreviewing the importance of early identification ofchildren with developmental concerns, including ASD,teaching participants diagnostic criteria and specificscreening skills, and increasing their awareness ofstatewide resources.

2. Disseminating Research and OtherEducational Resource Materials

The DBP grantees have also worked toincrease health care providers’ awareness of the latestresearch on ASD, information on screening practices,and directories of services to which they can referchildren and families. As discussed in Chapter V, DBPfaculty and trainees are actively engaged in presenting

and publishing academic research related to ASD, including translational research on screening,diagnosis, and treatment practices for ASD. However, several DBP programs also used the CAAI fundsto disseminate information to providers through online educational resource materials. A few examplesinclude the following.

Online Screening Toolkit. The DBP program at the Children’s Hospital of Boston used the CAAIfunds to develop an online autism-screening toolkit for primary care providers(www.autismscreening.org), an offshoot of its online toolkit for developmental screening(http://developmentalscreening.org). This Web site provides everything a provider needs to know aboutscreening a child for autism using a validated tool, including a comparison of the validity of variousscreening tools and instructions on how to use the tools and interpret the results. The Web site alsoprovides information on implementing screening into clinical practice, including how to create a referralsystem for children with possible developmental needs and how to integrate billing for screening intoexisting systems.

Enhancing Web Content on ASD Identification and Services. Similarly, although not directlysupported by the CAAI funds, the DBP program at Albert Einstein College of Medicine has worked withits local AAP chapter to update its Web materials highlighting recognition of ASD and access to services.This Web site targets primary practitioners and includes such content as early signs and symptoms of

USING CAAI FUNDS TO INCREASEPROVIDERS’ AWARENESS OF ASDSCREENING TOOLS ANDIMPLEMENTATION

To address many providers’ concernsabout ASD screening, the DBP program atthe Children’s Hospital of Boston leveragedthe CAAI funds to develop an online ASDscreening toolkit for pediatricians. Amongother information, this Web site includesbackground information on the need forvalidated screening, how to choose theright screening tools, how to set up apractice to enable regular screenings, whatdifferent tools cost, and how much timedifferent tools take. The program directorreported that site visitors come fromacross the country and around the world.


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ASD, links to the M-CHAT screening tool, and resources across New York State to which providers canrefer families.

B. RAISING AWARENESS IN THE COMMUNITY

Beyond primary care providers and allied healthprofessionals, the DBP programs have also aimed toincrease awareness of ASD among nonmedicalprofessionals such as educators, childcare providers, andearly interventionists, as well as families and the generalpublic. These groups are those most likely to encounteryoung children exhibiting signs of possible developmentaldisabilities. Reaching these groups maximizes thepossibility of early detection and early intervention toimprove outcomes. This section describes the DBPgrantees’ efforts to build awareness in the communitythrough:

Informational events for the publicDissemination of educational resource materialsPublic-awareness campaigns


1. Informational Events for the Public

The CAAI supplement supported the DBP programs in offering a variety of training and otherinformational events for community professionals and families in an effort to raise awareness about ASDscreening, diagnosis, and treatment. The DBP programs often used these informational events asopportunities to educate community professionals about the role of the DBP programs and how variousprofessions—DBP programs, early interventionists, educators, etc.—can work together to improve thesystems of services for children with ASD and their families. Three of these events are discussed below.

a. Informational Events for Community Professionals

The DBP programs have hosted various seminars and other informational events for nonmedicalprofessionals in the community who encounter children with ASD, including educators, earlyinterventionists, daycare providers, and others. For example:

A neuropsychologist from the DBP program at Case Western Reserve University has provided anumber of lectures for educators, such as a recent talk on cognitive behavioral issues ofadolescents with high-functioning ASD.

The DBP program at the Albert Einstein College of Medicine hosted a workshop for 75 seniorearly intervention initiative officials of New York State on updates in the diagnosis and treatmentof ASD.

The Children’s Hospital of Philadelphia has held seminars educating professionals on how to helpfamilies take the next step after an autism diagnosis.

REFLECTING ON INCREASES INAWARENESS ABOUT ASD IN THECOMMUNITY

“I’m struck by the fact that theparents who come to us are muchmore aware of the services in thecommunity. It’s not just what we’vedone, but that the whole CombatingAutism Act has had an impact.”



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As part of its statewide outreach efforts, theDBP program at the Children’s Hospital of Bostonutilized its CAAI supplement to directly fund a freetraining lecture to 20 leaders of the AssociatedDaycares Organization of Massachusetts about earlysigns and symptoms and screening for ASD. Daycareproviders represent a critical audience for increasingawareness about ASD identification since, as theprogram director pointed out, “other thanpediatricians, daycare is the most common place where[young] kids go.” A similar complimentary trainingwas held for early intervention and early childhoodspecialists on early identification of children withASD, entitled “Autism in the Very Young Child: FromResearch to Reality.” This event attracted 275attendees from across the State. With the support ofthe CAAI funding, the DBP program was able toprovide the lecture and parking free of charge to makeit easier for people to attend.

b. Informational Events for Parents

Informational events for parents tended tofocus on intervention strategies and coordination ofcare for children who have already been diagnosedwith autism. For example:

The DBP program at Boston Universityleveraged the CAAI funds to offer a 6-week workshopat a community library for parents of children withASD. The workshop focused on intervention strategiesfor everyday behavior problems and was held fourtimes a year during the grant period, including once inVietnamese.

The DBP program at the Children’s Hospitalof Philadelphia offers a 6-hour parent support and education program entitled “Next Steps.” Thisprogram for parents with a child recently diagnosed with ASD is designed to increase theirawareness of services available to them and to network them with both providers and otherparents for support. Prior to receiving the CAAI supplement, the program had offered thisseminar once or twice a year, but the supplemental funds have enabled the program to offer itthree or four times a year.

c. Informational Events for Both Professionals and Parents

Some events are designed for both parents and community professionals. For example:

The DBP program at Case Western Reserve University offers a six-session seminar series forprofessionals, parents, and students, entitled “A Better Understanding of the Spectrum of Autismand Practical Intervention Strategies.” According to the grantee, “the course is designed to

INCREASING AWARENESS OF ASDTHROUGH DISSEMINATION OFEDUCATIONAL RESOURCE MATERIALS

DBP programs disseminate a variety ofeducational resource materials in an effortto increase awareness of ASD amonghealth care providers, nonmedicalprofessionals, and families. Thesematerials include the CDC’s “Learn theSigns. Act Early.” materials, brochures inparent resource centers, researchmanuscripts in peer-reviewed publications,newsletters covering research andlegislative news, and resources andsupport services.


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improve understanding of the medical, behavioral, social, sensory, and educational issues relatedto autism spectrum disorders.”

In partnership with its LEND program, the DBP program at the Children’s Hospital ofPhiladelphia hosts an annual conference on developmental disabilities for parents and communityprofessionals. Through its prioritization of autism among the programs’ many activities, theCAAI funding has promoted a greater focus on autism-specific content in the conference, such asbehavioral interventions for ASD and Pennsylvania’s new legislation regarding insurancecoverage.

2. Dissemination of Educational Resource Materials

In addition to hosting informational events, grantees disseminate information in the form ofeducational resource materials. These efforts mostly target families, typically those who have a childalready diagnosed with ASD. Many programs, forexample, have parent resource centers or libraries,which provide a wide array of materials on ASDresearch, treatment, and services, often in the form ofmultiple media, including books, brochures, DVDs,and CDs.

Some programs have used the CAAIsupplemental funds to support their efforts todisseminate information via newsletters. Twoexamples are the following.

Children’s Hospital of Boston. This DBPprogram has developed an email newsletter for familiesof a child newly diagnosed with ASD. The CAAIfunds were used to support the faculty time spentwriting the content for the newsletters. Familiesreceive a newsletter once a week for the first 26 weeksafter diagnosis, and then every other week for theremainder of the first year. More than 1,500 familieshave signed up for this newsletter, which providesinformation about services they may need, resourcesthey can utilize, advocacy and legislative issues aroundASD, the latest research and events related to ASD,and recommendations on how to advocate for theirchild. The DBP program director described this as oneof the program’s most successful efforts to increaseawareness of issues related to ASD.

Albert Einstein College of Medicine. Incollaboration with its affiliated Early InterventionTraining Institute, the DBP program at the AlbertEinstein College of Medicine also distributes anewsletter about ASD and other DD, though itprimarily targets school personnel rather than families.Indirectly supported by the CAAI, this newsletter has

LEVERAGING CAAI RESOURCES TOINCREASE AWARENESS OF ASDRESOURCES AND SERVICES

The DBP programs at Boston Universityand Children’s Hospital of Bostonleveraged CAAI resources with externalphilanthropy funds for the AutismConsortium of Boston to create aninformation packet for parents about whatto do following an ASD diagnosis, as well asa manual for transitioning autistic youthinto adulthood. Along with a database ofservice providers, these products are freeand available for download online.


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recently focused on intervention strategies for children with ASD, such as sensory integration and appliedbehavioral analysis (ABA). This semiannual newsletter is received by approximately 6,000 individualsand 500 childcare centers and Head Start programs through collaboration with the New York CityChildren’s Services Division of Childcare and Head Start.

Some programs collaborate with other entities to increase the reach of awareness-building (andother) activities. For example, the DBP programs at Boston University and the Children’s Hospital ofBoston are members of the Autism Consortium, a group of clinicians and researchers from across Bostonwho have been working together for the last several years. Leveraging some of their CAAI resourceswith the external philanthropy funding for the Consortium, the group collaborated on several projectsrelated to increasing awareness of issues related to ASD, as described below.

First, the group compiled information todistribute to parents about what to do following anASD diagnosis. These materials were translated intoseven languages.

Second, the group developed a database of allthe resources in the New England area for families ofchildren with autism.

Third, in collaboration with schools and State-funded systems, the group completed a 75-pagehandbook for families that guides them through thetransition to adulthood for youth with ASD, includingup-to-date information and links to communityagencies. This manual is given out to familiesthroughout Boston starting when their children are 10or 11 years old. Each of these products is availablefree of charge on the Autism Consortium Web site.

3. Public Awareness Campaigns

A third mechanism for increasing awarenessamong the broader community is participation of DBPfaculty and trainees in public awareness campaigns.The CAAI supplement has supported the participationof faculty representatives from several DBP programson governor’s and mayor’s commissions on autism,which typically include a component focusing onincreasing public awareness about autism. The Bostonmayoral committee on autism, for example, hasworked on spreading awareness of ASD incommunities that have not been reached, such aslimited-English-speaking communities whoselanguages do not include a term for “autism.”

Faculty and fellows from DBP programs havealso played key roles in regional Act Early Summits.These regional meetings of stakeholders help to

EXTENDING THE REACH OF THE “LEARNTHE SIGNS. ACT EARLY.” MESSAGE

DBP faculty play key roles in regional ActEarly summits. Faculty from the DBPprogram at the Albert Einstein College ofMedicine, for example, participated in aworkgroup, which developed a PSA aboutthe CDC’s “Learn the Signs. Act Early.”campaign. This PSA was circulated tomedia outlets in English and Spanishthroughout the NY metro area. In addition,since the summit, staff members havecarried the message of the CDC campaignto more than a thousand trainees inpediatric clinics; daycare, preschool, andfoster care workers; and members of thefamily court system.


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develop a common understanding of the challenges and barriers to early identification of ASD and otherDD and allow them to develop State-level plans for enhancing early identification. One of the majorobjectives of these summits is to increase awareness about ASD and the importance of early intervention.Following the summits, the DBP programs work toward these objectives through their training events forproviders, practitioners, and families; by disseminating materials such as CDC’s “Learn the Signs. ActEarly.” materials; and through working with various stakeholders to increase outreach.


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CHAPTER VII: IMPROVING SYSTEMS OF CARE FOR CHILDRENWITH ASD AND THEIR FAMILIES

Although public-health campaigns are urging parentsto respond early to signs of developmental delays in theirchildren, many families still face significant challenges inaccessing comprehensive, coordinated care that includestimely screening, evaluation, and treatment for ASD. Thesechallenges include a shortage of professionals who are skilledin providing needed ASD services, long wait times betweenscreening and diagnosis, difficulties with reimbursement, andsocioeconomic and language barriers, among others.

With support from the CAAI supplemental funding,the DBP grantees are working to improve systems of care by:

Engaging in a variety of activities that addressspecific barriers to screening, diagnosis, andtreatment of ASDActively collaborating with a variety of otherstakeholders at the micro and macro level to promotemore comprehensive, integrated systems of care forASD

These activities primarily address the DBP objectiveof reducing barriers to care and improving systems of care.As a whole, these efforts address each of the three long-termgoals of the CAA by helping to develop a system of servicesthat includes early screening, diagnosis, and intervention forASD. The CAAI supplement has played an integral role inthese efforts to improve systems of care by 1) supportingadditional trainees, 2) funding additional CE and other training events, and 3) providing salary support forfaculty and fellows to engage in various ASD-related projects and initiatives.

This chapter discusses the ways the DBP grantees are improving systems of care by reducingbarriers to ASD screening, diagnosis, and treatment and by promoting a more comprehensive system ofservices around ASD. Section A describes DBP activities addressing barriers to screening and diagnosis,Section B describes activities addressing barriers to treatment, and Section C describes collaborativeactivities addressing the need for an integrated system of services.

A. ADDRESSING BARRIERS TO SCREENING AND DIAGNOSIS

One of the most frequently cited barriers nationwide to ASD screening and diagnosis is theinadequate number of professionals trained to screen for and diagnosis ASD. With the support of theCAAI supplemental grants, the DBP grantees are actively working to address this shortage through theirtraining activities, discussed in Chapter IV. This section discusses additional barriers to ASD screeningand diagnosis, including 1) perceived barriers to screening, 2) socioeconomic and cultural barriers, 3)long wait times between screening and diagnosis, and 4) lack of adequate reimbursement.

IMPROVING SYSTEMS OF CARE INMASSACHUSETTS FOR CHILDRENWITH ASD AND THEIR FAMILIES

The CAAI supplemental grants cameat a critical time for Massachusetts,shortly after a State mandate ondevelopmental screening waspassed. Many pediatricians andother professionals working withchildren were unfamiliar with howto identify and screen for ASD.

Through a combination of extensivetraining initiatives for professionalsstatewide; translational research onASD screening, diagnosis, andtreatment; and the development ofan online screening toolkit andother materials, the DBP program atthe Children’s Hospital has used theCAAI supplemental funds to helpdevelop what the program directorcalled “an incredible system of childfind,” of which the director is “veryproud.”


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1. Perceived Barriers to Screening

DBP program directors noted several perceivedbarriers that often prevent pediatricians and other providersfrom screening children for ASD, or even discussing autismwith parents. Failure to provide regular screening for ASDhas been attributed to pediatricians’ concerns about:

Their level of expertise relating to ASDThe time it might take to screen a child, especially inthe context of already busy pediatric practicesThe difficulties of incorporating screening andreferral procedures into the office settingInadequate reimbursement from insurance

companies, or the financial burden that may be placed on the familyThe lack of diagnostic and treatment services available to children who screen positive for ASD

DBP grantees have carried out multiple initiatives to address these perceived barriers toscreening. Some programs, for example, have provided direct support to pediatric practices that wereworking to incorporate screening and referral procedures into clinical practice, while others havedisseminated results of evaluations of screening efforts so that a larger audience of providers may applythe lessons learned. Some examples of these efforts follow.

Online Autism-Screening Toolkit (www.autismscreening.org). Discussed previously in ChapterVI, this toolkit was developed by the DBP program at the Children’s Hospital of Boston and directlyfunded by the CAAI supplemental grant. It focuses on screening practices, how to implement them in theoffice setting, and how to create a referral system for management of children with possibledevelopmental needs.

Training Pediatric Office Staff on Screening Procedures. The Children’s Hospital of BostonDBP grantee has also used the CAAI funds to train pediatric office staff on how to incorporate screeninginto wellness visits, including such details as where to put the screening tool in the patient file. Thisendeavor is helping to ensure that pediatricians will feel comfortable with screening and will have amechanism for doing it as a regular practice during check-ups.

Laminated M-CHAT Tool. Providers can use this tool, developed by the DBP program at CaseWestern Reserve University and partially funded by the CAAI grant, quickly and easily in an officesetting, along with a referral pad listing various resources to which providers can refer families forservices and further information.

Making Screening Tools Available in Electronic Health Records. The DBP program at theChildren’s Hospital of Philadelphia has implemented developmental and autism-screening tools into theelectronic health records shared by the network of primary care practices affiliated with the hospital in aneffort to ease the implementation of screening into routine practice.

Disseminating Evaluation Results of Routine Screening Implementation. The CAAI funds aresupporting several of the DBP grantees’ faculty and fellows involved in evaluating the implementation ofroutine screening into primary care practice. The grantee at the Children’s Hospital of Boston has alreadypublished the results of its evaluation, finding that these screenings did not result in an additional timeburden on the office visits.

SHORTAGE OF PROFESSIONALSTRAINED TO DIAGNOSE ASD

“There are not enough specialists—developmental-behavioralpediatricians, neurologists,psychiatrists, and psychologists—nationally to meet the needs,especially if almost 1 percent of thepopulation has an ASD disorder.”

– DBP program director,Children’s Hospital of Philadelphia


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Disseminating Research on Reimbursement for Screening Services. In response to the concernof many providers that services will not be adequately reimbursed by insurance or that claims will getpassed on to the family, the DBP program at Case Western Reserve University has collected anddisseminated data demonstrating that physicians can successfully bill and collect for screening services inprivate practice. The data showed that parents only had to pay for 2 or 3 out of 92 screenings, and forthose who did pay, the charge was minimal. These data showed success in receiving reimbursement fromprivate insurance companies as well as Medicaid.

2. Cultural and Socioeconomic Barriers to Care

Families from immigrant, minority, low-income, and otherwise underserved populations oftenface additional barriers when it comes to screening, diagnosis,and effective treatment of ASD. Language barriers, forexample, make it difficult to effectively communicate withnon-English speakers, and underreporting of developmentalconcerns such as autism in some cultures presents a furtherbarrier to screening. In low-income communities, everydaychallenges such as lack of access to reliable transportationand childcare make it difficult for parents to schedule, letalone bring in, their children for screening, diagnostic, andtreatment services. The DBP program director at YaleUniversity pointed out that parents in these situations arealready facing many different stressors on a day-to-day basis,which can make the challenges associated with locating andseeing a qualified provider seem insurmountable.

Each of the DBP grantees is currently serving aclinical population that is largely underserved, includingfamilies living in poverty, immigrant families, and childrenand families from racial and ethnic minorities. DBP granteesreport a total of 111 faculty and fellows in 2009–10 who wereworking in clinical settings located in an underserved area (orwho are otherwise working with underserved populations), and 116 in 2010–11 (Figure VII.1).

MEETING THE NEEDS OFUNDERSERVED POPULATIONSREMAINS A CHALLENGE

“I think we need to developalternative models of care. A lot ofour families don’t make it to theevaluation… Our no-show rate forunderserved families is very high… Ithink we need more novel ways ofevaluating kids that are morecommunity-based instead of havingpeople coming in to our clinics. “

– DBP program director at YaleUniversity, on what needs to be

done to address barriers to care forunderserved populations


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UNDERSERVED POPULATIONS, BY YEAR

Academic Year

Source: NIRS data

The DBP grantees have utilized various means toaddress cultural and socioeconomic barriers to care.Examples of these efforts follow.

To address the needs of non-English-speakingpatients, DBP programs have provided materials in variouslanguages and used translators during interactions withpatients when the clinician does not speak the language. TheDBP program at Boston University, for example, hasmaterials translated into Haitian Creole, Mandarin,Vietnamese, Portuguese, and Spanish. Many report thatdespite the availability of translators for some languages,however, communication remains a barrier. According to theprogram director at the Albert Einstein College of Medicine,“We have translators for Spanish, but not for otherlanguages. We have families from Africa, Eastern Europe,etc. and don’t have translators for them. So communicationis [still] a challenge.”

DBP programs also try to use and recruit staff whoare diverse themselves, since patients may be morecomfortable with someone from a similar background. Froma linguistic perspective, having a native speaker is beneficialbecause, as the DBP program director at Yale Universityexplained, “it is very difficult to administer a test to a childthrough a translator.” From a cultural perspective, it ishelpful to have someone who “speaks the same culture.”Thus, each grantee sets an annual target for the recruitment oflong-term trainees from underrepresented groups. In 2008–09, two-thirds of the grantees had met these recruitmenttargets, and in 2009–10, this figure increased to 83 percent of

REDUCING BARRIERS TO CAREAMONG NON-ENGLISH-SPEAKINGPOPULATIONS

The CAAI-funded “mini-fellowship”developed by the DBP program atBoston University is reducingbarriers to care in non-English-speaking populations by buildingbridges into these communities andproviding critical ASD-relatedtraining to community healthpractitioners. The program directorreported seeing improveddiagnostic referrals from thesehealth centers: “[We’re seeing] adecrease in the referrals of childrenwho didn’t need to see us in thefirst place, which is particularlyimportant around the parents whodon’t speak English. I think [theproviders] are better prepared toget a positive M-CHAT and to knowwhat questions to ask to clarify[whether] they really need to seeus, or is this really a languageproblem or a cultural interpretationof the question. So what we’reseeing are more appropriatereferrals.”


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grantees. Twenty-six percent of the DBP long-term trainees were from underrepresented groups in 2008–09, increasing to 32 percent in 2009–10 (Figure VII.2).

26%

32%

0

5

10

15

20

25

30

35

2008–09 2009–10

Percentof

Trainees

From

UnderrepresentedGroups

FIGURE VII.2PERCENT OF LONG-TERM TRAINEES FROMUNDERREPRESENTED GROUPS, BY YEAR

Academic Year

Source: DGIS data

One final way the DBP programs strive to address the needs of underserved populations is byemphasizing cultural competency in their training program, both as explicit topics covered in thecurriculum, as well as in the context of clinical interactions. For example, as the DBP program at theAlbert Einstein College of Medicine explained:

“Given the important contribution of cultural issuesto family attitudes and expectations with respect tochildren with developmental-behavioral problems,such issues are regularly discussed by faculty inindividual precepting sessions with residents andfellows… We emphasize cultural humility andcommunication as vital to effective patient care, andinclude didactic sessions and readings on thissubject.”

The DBP programs have long-established goalsrelating to cultural competency. Figure VII.3 below showsthe percent of DBP grantees completely meeting selectedcultural competency goals. These goals include thefollowing: 1) the cultural and linguistic competenceknowledge and skills are included in the didactic componentsof training; 2) the cultural and linguistic competenceknowledge and skills are included in the clinical componentsof training; 3) faculty/staff are culturally diverse andlinguistically and culturally competent; and 4) faculty/staffare regularly trained on cultural and linguistic competencyissues. While goals related to incorporating culturalcompetency into the curriculum are being met, meeting goals

THE CAAI HELPS REACHUNDERSERVED POPULATIONS

“In hiring a Chinese American to bepart of our fellowship, we’ve reallyreached a very underservedpopulation in the U.S. that hastremendous difficulties withconfronting the issues of autism…There are very few ChineseAmericans in DBP anywhere, andshe also happens to be fluent inCantonese and Mandarin. So that’sgiven us a great ability to care fora… more diverse population thatreally is underrepresented in care inthis area because there aren’t verymany people who can speak theirlanguage.”

– DBP program director atChildren’s Hospital of Boston, on

one of the most importantcontributions of the

CAAI supplement


Page 49

related to maintaining a culturally diverse faculty and staff continue to pose a challenge.

83% 83%

17%

67%

83% 83%

33%

50%

0102030405060708090100

Culturalcompetency in

didactics

Culturalcompetency in

clinical

Faculty/staffdiverse andculturallycompetent

Faculty/staffregularlytrained incultural

competency

Percentof

GranteesMeeting

Goals

FIGURE VII.3PERCENT OF DBP GRANTEES COMPLETELY MEETING SELECTED

CULTURAL COMPETENCY GOALS, BY YEAR

2008–09

2009–10

Cultural Competency Goals

Source: DGIS data

3. Long Wait Times Between Screening and Diagnosis

Shortages of professionals to diagnose ASD have led to long wait times between screening anddiagnosis. Improvements in screening rates have exacerbated these wait times by increasing the numberof children referred for ASD diagnosis. Similarly, limitations of the M-CHAT screener result inincreased referrals to specialists on the basis of screening positive. Lack of knowledge about the need fora thorough follow-up interview after the screening tool is administered can lead to insufficient caution inreferral to diagnostic services where, for many of the children, ASD is ruled out.

Finally, coupled with the shortage of diagnostic specialists, the time involved in conducting thesediagnostic assessments presents a further barrier to timely diagnosis: a thorough assessment requiresobtaining a full patient history, observation of the child, a family interview, administration of a diagnostictool, and a detailed follow-up meeting with the family. As one DBP program director described, “To do adiagnosis, an evaluation, and informing conference, to get the family on the right page and moved towarda real [executable] plan…, it’s all very labor-intensive work.”

The training activities discussed in Chapter IV are the primary method for addressing thesebarriers to care. The program director at Yale University summarized the issue: “The truth of the matteris that there are very long wait times for good evaluations and the more people you train, the more peoplewill be seeing these kids—a simply resource/manpower issue.” As such, the support of trainingconstitutes a major contribution of the CAAI supplement grants to reducing this barrier and improvingsystems of care. The current training activities not only increase the pipeline of professionals trained indiagnosis, but also help to reduce the wait times between suspicion and confirmation of ASD both nowand in the future.

DBP grantee training activities aimed at increasing providers’ skills in using the M-CHATscreener also address long wait times by improving the quality of referrals made to diagnostic specialists.These trainings emphasize, for example, the importance of conducting a detailed, follow-up interview


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after a child screens positive for ASD to determine if the child really needs to be referred for diagnosticassessment or not. With fewer referrals of cases where ASD is ruled out, the bottleneck for diagnosticappointments is reduced and more confirmed cases can be transitioned into treatment.

Finally, as discussed in Chapter V, several of the DBP programs have implemented specialdiagnostic clinics for autism targeted specifically for very young children. In some cases, the CAAIsupplemental funds contributed directly to helping get these clinics off the ground, while in others thefunds contributed indirectly through salary support of faculty and fellows. In all cases, these clinicscontributed to improved systems of care by decreasing wait times to confirm or rule out ASD for thesehigh-priority children, and in the case of confirmed diagnoses, getting these children into earlyintervention services sooner than if they were on the usual waiting list.

It is important to note that while these specialized diagnostic clinics have reduced waiting timesfor some children, they still face tremendous demand. The DBP program at Case Western ReserveUniversity, for example, had to stop taking referrals within 6 months of opening its Rainbow AutismDiagnostic Clinic due to the tremendous number of referrals it received. The great demand for diagnosticservices points to the need for further progress in addressing these challenges.

4. Lack of Adequate Reimbursement

Lack of adequate reimbursement for ASD diagnostic services—as well as for screening andtreatment services—is part of a broad systems-level reimbursement problem that presents a key barrier tocare. Diagnostic visits are not only costly to the families, but also to the providers. Diagnosticassessments are time consuming, and providers are often not adequately reimbursed for the time spent

providing those services. As the DBP program director at theChildren’s Hospital of Philadelphia reported, DBP programsare often only reimbursed for a 10-minute physical medicalassessment rather than the full 2 hours or more that acomprehensive ASD assessment might take. The directorexplained that billing codes contribute to the source of theproblem: reimbursement is sometimes denied for the servicesprovided through its clinic because autism falls under thecategory of mental health, while the clinic is designated as aphysical health provider. Its hospital is bound to the CMSguidelines for billing codes, which are more medicallyfocused, resulting in the hospital losing substantial revenueevery year. The problems caused by billing code andreimbursement issues remain major concerns in the field ofdevelopmental-behavioral pediatrics.

Because of these issues, DBP programs often losemoney. According to the DBP program director at theChildren’s Hospital of Boston, “Ninety-five percent of DBPprograms lose money, which leads to risk of (the programs)getting cut. [Developmental-behavioral pediatricians] arepaid less than primary care providers are on average. So,[there’s] little incentive for doctors to go into the specialtyand little incentive for hospitals, universities, and practices tokeep DBP programs.” As a result, these reimbursementissues are integrally related to the shortage of diagnostic

REIMBURSEMENT CONCERNS ANDSHORTAGES OF DIAGNOSTICPROFESSIONALS GO HAND INHAND

The DBP program director at YaleUniversity explains howreimbursement issues contribute tothe shortage of professionals todiagnose ASD and how thosesystems-level issues ultimatelyimpact the systems of care forchildren and their families: “Thebiggest thing is, if these evaluationsare not appropriately reimbursed, itis really difficult for [DBP programs]to [expand]. You have to be able tobe financially compensated or itcreates a huge bottleneck. If youtrain a million people and they can’tget paid for their work, they won’taccept insurance; kids on Medicaidwon’t be able to get propertreatment.”


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professionals.

To ease the barrier of reimbursement for families, many of the DBP grantees accept anyinsurance, which is often not the case among many private practices. The programs at Case WesternReserve University and Children’s Hospital of Philadelphia reported addressing this issue by trainingproviders in private practice on appropriate coding and billing practices for ASD screening.

B. ADDRESSING BARRIERS TO TREATMENT OF ASD

Many children do not receive early intervention services even when they are recommended.Beyond the barriers to screening and diagnosis that delay treatment, there are simply not enoughproviders of early intervention services, families and providers are unaware of available services, andfamilies may face difficulties navigating complex and potentially disjointed systems of care.

While DBP program trainees do not typically provide ASD treatment (other than pharmacologictreatment), they play a central role in coordination of care and actively work to connect families withearly intervention and other treatment services. Interdisciplinary training and practice is more the rulethan the exception in the DBP programs. The DBP specialists regularly work in concert with speechpathologists, psychologists, pediatric neurologists, nurse practitioners, occupational therapists, socialworkers, educators, and nutritionists. This interaction of disciplines is critical to providing thecoordination of care necessary to meet the needs of children with ASD and their families. The DBPprogram at Yale University, for example, brings an early intervention specialist into its clinic each weekto help connect families with needed services when their child screens positive. The “Fast Track”evaluation clinics discussed above also facilitate earlier entry into intervention services by gettingchildren diagnosed earlier and accelerating their transition into treatment.

The DBP programs have long advocated on the behalf of children and families that are notreceiving needed services. Some DBP programs report, for example, working closely with the schoolsystem to ensure that children with ASD have individualized education programs (IEPs) that indicate thatdiagnosis, and that they receive appropriate services. Fellows and faculty from the Children’s Hospital ofBoston and Boston University DBP programs, for example, recently met with the AssistantSuperintendent of Schools to present data they had collected about children with autism in Boston’spublic schools who are not receiving appropriate services and to discuss the problem and potentialsolutions.

The DBP programs also work to build awareness among health care providers about the need tosimultaneously refer to early intervention services at the same time that they recommend diagnosticevaluation. The DBP program director at Boston University reported that one of the program’s biggestsuccesses in improving systems of care has been getting the message out to community health centerpractitioners about the importance of referring simultaneously to DBP programs for diagnosis and to earlyintervention specialists or to the public school system. This success resulted from the program’s CAAI-funded “mini-fellowship” program for community health practitioners.

Finally, the DBP programs also work to facilitate treatment of medical conditions in children withASD. For example:

As discussed previously, the DBP program at the Children’s Hospital of Boston is activelydeveloping interventions around “social stories,” stories to ease autistic children’s anxiety bypreparing them for what they will experience when seeing a doctor, getting blood drawn, andvisiting a dentist.


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The DBP program at Case Western Reserve University has developed within the program’shospital a network of medical specialists who are experienced in and interested in treatingchildren with ASD. This network includes specialists who treat conditions commonly afflictingchildren with ASD, such as gastroenterologists, otolaryngologists, neurologists, and those whotreat sleep issues and metabolic syndrome issues.

C. CREATING COMPREHENSIVE SYSTEMS OF CARE

Meeting MCHB’s objective of enabling children with ASD to reach their full potential requiresthat families have access to a robust, coherent system of services that can serve individuals with ASD.Often, however, systems of services are fragmented and in need of improved infrastructure. Lack ofcoordination across service systems and providers is a commonly reported impediment to appropriatecare. As discussed above, many physicians, for example, are reluctant to screen for ASD because theyare unaware of where to refer families for additional services or how to go about getting such servicescovered through insurance.

The DBP grantees are engaged in various activities to address these systems-level barriers to care,some of which have already been discussed. As described in Chapter VI, for example, grantees haveworked to increase public and providers’ awareness of available services for children with ASD and theirfamilies and to increase providers’ awareness of reimbursement procedures for ASD services. Thissection focuses on the ways that DBP programs have strengthened new and existing collaborations toimprove systems of care, including partnerships with State Title V and other agencies, universities,hospitals, schools, and community organizations.

These collaborations often involve providing technical assistance and consulting services toagencies and organizations at the local or State levels. The DBP grantees report 48 technical assistanceand collaboration activities in 2009, and 153 such activities in 2011, a more-than-threefold increase overthe grant period (Figure VII.4).

48

106

153

020406080100120140160180200

2008–09 2009–10 2010–11

Num

berof

ActivitiesProvided

FIGURE VII.4NUMBER OF TECHNICAL ASSISTANCE, CONSULTING, AND

COLLABORATION ACTIVITIES PROVIDED TO GOVERNMENT AGENCIES,COMMUNITY ORGANIZATIONS, AND OTHER ENTITIES, BY YEAR

Academic Year

Source: NIRS data


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While many collaborative endeavors have been noted throughout this report, this sectionhighlights collaborative activities relating to ASD during the grant period at the State and communitylevels, as well as among other CAAI grantees. Each is described below.

1. State-Level Collaborations

One of the best examples of State-level collaborations around issues of autism comes from theDBP program at the Children’s Hospital of Boston, whose staff serve as consultants to MassHealth, theState Medicaid agency, regarding the State mandate for universal behavioral health screening. In additionto conducting the myriad of training activities discussed in Chapter VI, the program staff are helpingMassHealth to select appropriate screening tools for autism screening, providing the agency with up-to-date research, and serving as liaisons between MassHealth and pediatric providers struggling withimplementing autism screening in the office setting. They continue to communicate with MassHealthregarding new tools and new data to ensure that the screening practices remain timely and appropriate.Together with the program’s statewide training of a broad array of professionals who work with children,these CAAI-supported efforts have expanded Massachusetts’ overall capacity to identify children withpossible ASD.

Members of the DBP staff at the Children’s Hospital of Boston have also used the CAAIsupplemental grants to support their consulting efforts with both the State Department of Public Healthand Department of Children and Family Services. As part of this collaboration, the DBP grantee hasprovided a coordinated strategy to screening and identifying children with ASD and other DD who arealready involved with the legal system, including planning and implementing revised developmental andbehavioral screening guidelines for children entering the custody of the Department of Children andFamily Services in Massachusetts. Together, these efforts improve the systems of care for a criticalpopulation of children, because children who have contactwith child protective services and court systems are oftenwithout routine pediatric primary care or stable childcareproviders who may provide developmental screening. Thus,monitoring these children for possible developmental-behavioral concerns, including autism, often relies on theobservations and actions of nontraditional clinical observers,including parents and caseworkers. What the DBP programhas done is provide a statewide model for collaborationbetween child protective services, the legal system, medicalproviders, and families to increase developmental screeningsamong this vulnerable population.

Other DBP grantees are also involved in workingwith State-level organizations on efforts aimed at improvingsystems of care for children with ASD and their families withthe support of the CAAI funds. For example:

Many programs have faculty who participate insystems-level task forces or committees covering issues related to autism. These groups includegovernors’ and mayoral task forces on autism, which aim to improve systems of services forchildren with ASD in various ways, such as by conducting needs assessments for services anddeveloping medical homes for children with autism.

IMPROVING STATEWIDE SYSTEMSOF CARE IN MASSACHUSETTS

“The fact that screening is going onalmost universally in the State ofMassachusetts for developmentalscreening and now autism screeningis the biggest change in systems ofcare since I’ve been in pediatrics.”

– DBP program director atChildren’s Hospital of Boston, on the

impact of the program’s training,technical assistance, and consultingactivities with State agencies and

other organizations around autism


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The DBP program at the Children’s Hospital ofPhiladelphia has collaborated with its State Title V agency,the Pennsylvania Bureau of Autism Services, to provideASD-related training and to conduct a statewide needsassessment.

Finally, several DBP grantees report participating intask forces or other work groups stemming from Act EarlySummit gatherings, which have provided forums to improvesystem collaboration. The DBP program at Yale Universityhas been particularly active with its Act Early Connecticutactivities. As discussed in Chapter IV, this collaborationamong stakeholders is producing a set of best-practicesguidelines for the diagnosis of children with ASD inConnecticut.

2. Community-Level Collaborations

Many DBP collaborative activities also occur at thecommunity level, including providing technical assistanceand consulting to schools and building networks ofstakeholders in the community around autism.

With CAAI support, several grantees report workingwith schools around issues of autism by providing technical assistance and consulting activities in thefollowing ways:

Providing developmental consultations for children in schools for autismReviewing school health policies and procedures to ensure policies are in place that are mindfulof the special needs of children with ASDTraining school staff on topics such as medication use and other DD that children with autismmay have

These activities contribute to the community-based clinical training for fellows and trainees.

Involving multiple stakeholders in the community, the DBP program at Case Western ReserveUniversity has used the CAAI supplement to help establish a network of institutions, organizations, andindividuals in the community committed to improving the systems of care for children with ASD andtheir families. First, this DBP program shared a portion of its grant money with two other local hospitals,which have fewer resources for providing training on ASD screening and diagnostic tools. The programdirector reported that these three hospitals typically competed against one another, so establishing acommunal, collaborative environment has been an important accomplishment of the CAAI supplementalgrant. Second, the grantee brought together various organizations and professionals from across the cityin a series of trainings, meetings, and networking events focused on autism and autism services in thecommunity.

3. Collaborations Among MCHB’s CAAI Grantees

The DBP grantees have also formed collaborations with other CAAI grantees to help achieve theobjectives of the CAAI and ultimately improve systems of care. Several of the DBP programs collaborate

BUILDING NETWORKS AS A MEANSOF IMPROVING SYSTEMS OF CAREIN THE COMMUNITY

The DBP program at Case WesternReserve University reported thatone of the most significantaccomplishments with the CAAIsupplemental grant has been toincrease the capacity for autismscreening and diagnosis throughtraining and networking.

“I think that we raised the bar inthis community, and I feel goodabout that... These collaborationsin a [competitive] community likeours, every little baby step, putseveral together, and it’s a really bigstep for the kids and families. Thiskind of thing really works for thekids and families.”


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with local LEND programs on training and other activities related to autism. In some cases, such as at theChildren’s Hospital of Philadelphia, the LEND and DBP programs are collocated, sharing faculty,trainees, and resources, and DBP fellows participate in the LEND program during the first year of theirfellowships.

The DBP programs are also located in the same institutions as some of the research grantees. TheDBP program at Boston University, for example, works with an investigator on one of MCHB’s R40research grants, also funded by the CAAI. In fact, this researcher is a practitioner who participated in thegrantee’s “mini-fellowship” program developed with the CAAI supplement. Additionally, researchers atthe Children’s Hospital of Philadelphia DBP program have recently applied to be part of the ATN, whichmay be able to receive funding through the AIR-P network.


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CHAPTER VIII: CONCLUSION

While ASD has long been a priority of the DBP programs, the CAAI funds allowed the programsto place an increased emphasis on autism in all of their activities. The supplemental funds were primarilyused to recruit additional trainees and to enhance the focus on autism in the didactic and clinical training.The grants also expanded the programs’ capacity to engage in autism-related projects and initiatives byproviding salary support for faculty and fellow time spent on nonclinical activities.

Although the supplemental grants were small relative to the overall cost of the DBP programs,grantees maximized the impact of the funds by building on their existing infrastructures. In the context ofresearch, for example, the CAAI supplements did not directly fund new research studies, but theyprovided salary support for additional faculty and fellow time to work on existing studies related toautism screening and diagnostic practices. Similarly, in the context of awareness-building activities, theCAAI funding provided salary support for faculty to engage in nonreimbursable activities such as servingon mayoral committees to spread awareness of ASD in communities speaking languages that do notinclude a term for autism.

The DBP programs also leveraged their supplementalgrants with other resources to achieve the objectives of theCAAI, which is particularly critical in light of the limitedresources and competing priorities that the DBP programsface. The programs at Boston University and the Children’sHospital of Boston, for example, improved systems of carefor autistic children and their families through theirparticipation in the Autism Consortium of Boston. Thiscollaboration is funded primarily through privatephilanthropy and other external funds, but with the support ofthe CAAI funds, DBP programs have been able to contributefaculty and fellow time to work on Autism Consortiumprojects, resulting in valuable products and resources forfamilies of children with ASD.

The DBP programs have made important progresstoward their objectives under the CAAI. The following werethe core achievements of the 3-year CAAI supplementalgrants. The programs:

Expanded the pipeline of DBP professionals specializing in diagnosis of ASDEnhanced the skills in ASD identification and screening among pediatricians in training, who willbe on the front lines of screeningIncreased the opportunities for practicing professionals to expand their ASD-related knowledgeand skills through CESupported the development and dissemination of research related to ASD, including translationalresearch on screening and diagnostic practicesHelped sustain and expand the DBP programs’ efforts to reduce barriers to ASD screening,diagnosis, and treatment, and to improve systems of care for children with ASD and their families

While measureable improvements in the CAA’s long-term goals of earlier screening, diagnosis, andintervention will require a longer period of time to become manifest, these preliminary findings provide afoundation for a more comprehensive assessment of CAAI outcomes in the future.

THE CAAI FUNDS SUSTAIN VITALPROJECTS AND INITIATIVESRELATED TO ASD

“[The CAAI] grants don’t just add towhat we’ve done, they sustainthem. You have philanthropy up toa point, but when you have othersources, you are able to sustain theefforts that you might not havebeen able to sustain otherwise.”

– DBP program director at theChildren’s Hospital of Boston, on the

impact of the CAAI supplementgrants and the importance of

leveraging funds


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In looking to the future, the study team has developed the following recommendations forcontinued progress in meeting the long-term objectives of the CAAI. First, HRSA/MCHB shouldcontinue to support the training of DBP professionals who can confirm or rule out ASD, as the shortageof these specialists constitutes one of the most significant barriers to timely diagnosis and treatment.Second, HRSA/MCHB should encourage DBP programs to disseminate their “success stories” inreducing barriers to ASD care and expand on, or replicate, these accomplishments where possible. Ashighlighted previously in this report, some of these success stories include the following:

Establishing and evaluating “Fast Track” diagnostic clinics to reduce wait times betweenscreening and diagnosis for high priority childrenDeveloping and disseminating online screening toolkits for providersEstablishing “mini-fellowships” for community health practitioners in underserved communitiesExpanding clinical capacity for ASD through training of nurse practitionersStrengthening networks of community partners to enhance systems of ASD services

Finally, HRSA/MCHB should continue support of DBP program collaborations with State-level partnersto further support systems-level change in ASD service delivery.


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REFERENCES

Boyle, C.A., Boulet, S., Schieve, L.A., Cohen, R. A., Blumberg, S.J., Yeargin-Allsopp, M., …Kogan,M.D. (2011). Trends in the prevalence of developmental disabilities in U.S. children, 1997-2008.Pediatrics, 127(6), 1034-42.

Bradstreet, J.J., Smith, S., Baral, M., & Rossignol, D.A. (2010). Biomarker-guided interventions ofrelevant conditions associated with autism spectrum disorders and attention deficit hyperactivitydisorder. Alternative Medicine Review, 15(1), 15-32.

Bryson, S.E., Rogers, S.J., & Fombonne, E. (2003). Autism spectrum disorders: Early detection,intervention, education, and psychopharmacological management. Canadian Journal ofPsychiatry 48(8), 506-516.

Dumont-Mathieu, T. & Fein, D. (2005). Screening for autism in young children: The Modified Checklistfor Autism in Toddlers (M-CHAT) and other measures. Mental Retardation and DevelopmentalDisabilities Research Reviews, 11(3), 253–262.

Filipek, P.A., Accardo, P.J., Baranek, G.T., Cook, E.H. Jr., Dawson, G., Gordon, B., …Volkmar, F.R.(1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism andDevelopmental Disorders, 29(6), 439-484.

Kogan, M.D., Blumberg, S.J., Schieve, L.A., Boyle, C.A., Perrin, J.M., Ghandour, R.M., …van Dyck,P.C. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among childrenin the U.S., 2007. Pediatrics, 124(5), 1395-1403.

Liptak, G.S., Benzoni, L.B., Mruzek, D.W., Nolan, K.W., Thingvoll, M.A., Wade, C.M., & Fryer, G.E.(2008). Disparities in diagnosis and access to health services for children with autism: Data fromthe National Survey of Children’s Health. Journal of Developmental Behavioral Pediatrics,29(3), 152-160.

Mandell, D.S., Wiggins, L.D., Carpenter, L.A., Daniels, J., DiGuiseppi, C., Durkin, M.S., …Kirby, R.S.(2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders.American Journal of Public Health, 99(3), 493-498.

Myers, S. M., & Johnson, C.P., the AAP Council on Children with Disabilities. (2007). Management ofchildren with autism spectrum disorders. Pediatrics, 120(5), 1162-1182.

Rice, C. (2009). Prevalence of autism spectrum disorders – Autism and Developmental DisabilitiesMonitoring Network, United States, 2006. Morbidity and Mortality Weekly Report, 58(SS10), 1-20.

Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110(6), 417-438.


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Shattuck, P.T. Durkin, M., Maenner, M., Newschaffer, C., Mandell, D.S., Wiggins, L., …Cuniff, C.(2009). Timing of identification among children with an autism spectrum disorder: Findings froma population-based surveillance study. Journal of the American Academy of Child andAdolescent Psychiatry, 48(5), 474-483.

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternaland Child Health Care Bureau (2008). Leadership Education in Developmental-BehavioralPediatrics (DBP) Expansion (Supplemental Funding) Announcement, Program Guidance.

U.S. Department of Health and Human Services, Interagency Autism Coordinating Committee. (2005,May). 2005 IACC autism spectrum disorder (ASD) services roadmap. Retrieved fromhttp://iacc.hhs.gov/publications/2005/services-subcommittee-report-may16.shtml.

Wiggins, L.D., Baio, J, & Rice, C. (2006). Examination of the time between first evaluation and firstautism spectrum diagnosis in a population-based sample. Developmental and BehavioralPediatrics, 27(2 Suppl), S79-S87.


Page A-1

APPENDIX A: CAAI FUNDING BY PROGRAM AREA

1Association of University Centers on Disabilities2Association of Maternal and Child Health Programs

Purpose Award Date Funding Amount1. Training ProgramsLeadership Education inNeurodevelopmentalDisabilities (LEND) TrainingPrograms

Sept. 2008 18 existing LEND grantees received additional funding ofapproximately $200,000 each per year for 3 years; 4 new LENDprograms were funded at approximately $550,000 per year for 3years

Sept. 2009 16 existing LEND grantees received additional funding ofapproximately $100,000 per year for 2 years; 1 new LEND wasfunded at $450,000 per year for 2 years

Developmental-BehavioralPediatrics (DBP) TrainingPrograms

Sept. 2008 6 existing DBP grantees received additional funding ofapproximately $50,000 per year for 3 years

National Combating AutismInterdisciplinary TrainingResource Center

Sept. 2008 1 grantee (AUCD1) received $500,000 for 1 yearSept. 2009 AUCD received $550,000 for 1 yearSept. 2010 AUCD received $638,000 for 1 year

2. Research ProgramsMCH Autism InterventionResearch Network on PhysicalHealth (AIR-P)

Sept. 2008 1 grantee received approximately $4 million per year for 3 years

MCH Autism InterventionResearch Network onBehavioral Health (AIR-B)

Sept. 2008 1 grantee received $2 million per year for 3 years

MCH Autism InterventionResearch Program Grantees

Sept. 2009 5 2-year grantees received approximately $400,000 per year for 2years

Sept. 2009 2 1-year SDAS grantees received approximately $100,000 for 1 year3. State Implementation ProgramsState Implementation Grantees Sept. 2008 6 States received approximately $300,000 per year for 3 years

Sept. 2009 3 States received approximately $300,000 per year for 2 yearsState Public HealthCoordinating Center

Sept. 2008 1 grantee (AMCHP2) received $250,000 per year for 2 yearsSept. 2010 AMCHP received $275,000 for 1 year


Page B-1

APPENDIX B: LOGIC MODEL FOR THE DBP PROGRAM

Funding

MCHB program staff

Collaboratingpartners

Recruitment- Set annual recruitment goals for number of

LT and MT trainees- Expand awareness of training opportunities

among racial/ethnic/cultural minorities andrecruit from institutions serving largepopulations of underrepresented students

- Recruit trainees from various disciplines- Recruit parents/family members to

collaborate with faculty and to serve asteachers/mentors

Training- Prepare fellows to become leaders in the

field; track their post-training activities- Provide training in interdisciplinary,

evidence-based clinical practice, withemphasis on screening, diagnosis, andevidence-based interventions for childrenwith ASD

- Provide CE for practicing professionals inscreening, assessment, and evidence-basedinterventions for ASD

Curriculum development- Enhance leadership curriculum and other

coursework to include expanded ASDcontent

- Incorporate principles of culturalcompetency, interdisciplinary practice, andfamily-centered care into coursework

- Enhance opportunities for learningadvocacy, counseling, and coordination ofcare

Research and dissemination- Advance translational research related to

ASD, including development and validationof ASD screening and diagnostic tools andpractices

- Disseminate research findings throughpublications, etc.

Needs assessment and TA- Confer with stakeholders to identify

local/regional training and infrastructureneeds

- Provide CE/TA in response to identifiedneeds

- Develop informational materials forfamilies

Expanding the pipeline of MCH professionalswith expertise in ASD- Number of long-term trainees/fellows and

medium-term trainees recruited annually bydiscipline

- Number of trainees recruited fromunderrepresented/minority groups

Building leadership- Number of long-term trainees who

successfully complete didactic leadershipcourses and who demonstrate competencyin related practica, program management,and teaching responsibilities

Enhancing professionals’ knowledge and skillsregarding valid screening and diagnostic toolsand evidence-based interventions for ASD- Number of trainees who successfully

complete coursework and demonstratecompetency in ASD screening, diagnosis andinterventions

- Number of practicing professionals fromvarious disciplines receiving CE in early signsand symptoms of ASD, the importance ofearly screening and intervention, and validtools for screening, diagnosis, andintervention

- Number of didactic courses developed orrevised to reflect new content on ASD

- Number of new clinical and community-based opportunities offered to enhancecompetencies of MCH professionals inscreening, diagnosis, and provision ofevidence-based interventions

Translating research into practice- Number of ongoing research projects,

including translational research on ASDscreening, diagnosis, and intervention

- Number of publications and presentations

TA/Consultation/Outreach- Number of TA, consulting, and collaboration

activities provided to government agencies,community organizations, and other entities

Objective 1. Increase awareness- Increase awareness about typical

developmental milestones; earlysigns/symptoms of ASD; and screening,diagnosis and evidence-basedinterventions for ASD among medicaland nonmedical professionals, families,and the public

Objective 2. Reduce barriers to screeningand diagnosis- Expand leadership in the field of ASD- Increase number of trainees with skills

to screen, diagnose, or provideevidence-based interventions forchildren with ASD, including those whowork with underserved populations

- Increase the cultural competency ofDBP faculty and trainees

- Improve the local and Stateinfrastructure for ASD screening,diagnosis, and treatment

Objective 3. Translate ASD research intopractice- Expand knowledge base on

translational research related to ASDscreening, diagnosis, and intervention

- Disseminate cutting-edge research topracticing professionals

Objectives 4-5. Train professionals to usevalid screening/diagnostic tools andprovide advocacy, counseling, andcoordination of care- Increase number of faculty providing

training in use of valid and reliablescreening and diagnostic tools andinterventions

- Increase number of trainees skilled inASD screening, diagnosis, andintervention

- Increase the number of CE and non-CEtraining activities focusing on ASDscreening, diagnosis, and intervention

- Engage trainees in systems-level ASDpolicy and program activities

Goal 1. Screen children early forpossible ASD- Increase the percentage of 18-

and 24-month-old childrenscreened for ASD

Goal 2. Conduct early,interdisciplinary evaluations toconfirm or rule out ASD andother DD- Reduce average age of

diagnosis for children with ASD- Reduce average time between

screening and diagnosis/ruleout

Goal 3. If diagnosis is confirmed,provide early, evidence-basedinterventions- Reduce average age of entry

into intervention for individualswith ASD

- Reduce average time betweendiagnosis and entry intoevidence-based intervention

- Increase the percentage ofchildren with ASD enrolled inearly, evidence-basedinterventions from a speciallytrained provider

Inputs ActivitiesProcess-LevelOutcomes/Outputs(1-2 year)

IntermediateOutcomes(3 year)

Long-TermOutcomes(Beyond Federalgrant period)


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APPENDIX C: STUDY DESIGN MATRIX

Research Questions Key Data Sources Data ElementsDBP Objective #1: Increasing awareness of developmental milestones, early signs of ASD and other DD, screening, assessment, and/or evidence-based interventions

among health care and allied health professionals, educators, community service providers, families, and the publicWhat are the DBP grantees doing to increase awareness amongMCH professionals (e.g., health care and allied healthprofessionals, psychologists and social workers, educators,community service providers)?

a. In what specific areas of focus are the DBP granteesincreasing the awareness of MCH physicians (e.g., earlysigns and symptoms, valid screening tools, assessment,etc.)?

b. How are the grantees increasing awareness among thenon-physician MCH professional community?

Semi-structured granteeinterviews

Grantee applications

Progress reports

NIRS

Qualitative DataDescription of activities performed to increase ASD awareness amongMCH professionals

Description of a) content and b) audiences (specific MCH disciplines)targeted for awareness-raising efforts

Description of formal and informal partnerships and collaborations withTitle V or other agencies to raise ASD awareness and results of suchefforts

Impact of collaborative efforts on raising awareness among various groups(e.g. health professionals, paraprofessionals, etc.)

Quantitative DataNumber of CE and non-CE training events held to address one or more ofthe following: early signs of ASD and other DD, screening, diagnosis,and/or evidence-based interventions for ASD and other DD

Number of professionals trained through CE and non-CE professionaldevelopment activities in one or more of the following: early signs ofASD, screening, diagnosis, and/or evidence-based interventions for ASD

Number of ASD-related a) articles published in peer-reviewed journals, b)educational products developed and disseminated (other than peer-reviewed), and c) presentations and total number reached through thesemedia

What are the DBP programs doing to increase awarenessamong families of children with ASD and the general public?



Progress reports

Qualitative DataDescription of activities performed to increase ASD awareness amongfamilies and the general public and any outcomes of such efforts

Descriptive assessment of impact of awareness-raising efforts to date

DBP Objective #2: Reducing barriers to screening and diagnosisWhat are some of the barriers to screening and diagnosis inyour region and nationally?

a. How has the DBP program expanded MCH leadership inthe field of ASD?

b. What have the DBP programs been doing to expandaccess to timely and accurate screening and evaluation

Semi-structured granteeInterviews


Progress reports

Qualitative DataDescription of barriers to expanding screening and diagnostic efforts bothlocally and nationally and which barriers are addressed by the programactivities

Description of activities undertaken to expand children’s access to timelyand accurate screening and diagnostic services for ASD


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Research Questions Key Data Sources Data Elementsservices for children?

NIRSDescription of formal and informal partnerships and collaborations toincrease access to a) screening services and b) diagnostic services

Descriptive assessment of impact of efforts to a) screen children as early aspossible, and b) conduct early, interdisciplinary evaluations to confirm orrule out ASD

Quantitative DataNumber of technical assistance, consulting, and collaboration activitiesprovided to government agencies, community organizations, and otherentities

How have the DBP grantees reduced barriers to screening anddiagnosis for underserved populations?

a. How has the DBP program expanded the supply of healthcare professionals from racially/ethnically/culturallydiverse population groups?

b. How has the DBP program expanded access to screeningand diagnostic services in underserved populations?



Progress reports

DGIS

Qualitative DataDescription of specific plans or actions to reduce barriers to screening anddiagnosis among underserved children and any preliminary results fromsuch efforts

Description of efforts to include working with children and families fromunderserved populations

Description of recruitment efforts to ensure trainee diversity, specificallyrecruitment of trainees from cultural or ethnic minority groups

Quantitative DataNumber of faculty and fellows working with underserved populationsNumber of long-term trainees who are from underrepresented groupsNumber of grantees completely meeting cultural competency goals

DBP Objective #3: Translating research into evidence-based practicesHow has the DBP program contributed to the knowledge baseregarding screening for and diagnosing ASD and other DD inyoung children?

How have the DBP programs contributed to translating ASDresearch into practice?



Progress reports

NIRS

Qualitative DataDescription of faculty and trainees conduct of research studies related toASD, including translational research

Description of DBP activities translating ASD research into clinicalguidelines for care

Description of research skills and activities included in training curriculumDescription of efforts to disseminate research via publications andpresentations

Quantitative DataNumber of faculty and fellows who participated in research on thedevelopment and validation of 1) screening tools and 2) diagnostic tools

Number of ASD and other DD related (a) articles published in peer-reviewed journals, b) educational products developed and disseminated(other than peer-reviewed), and c) presentations and total numberreached through these media


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Research Questions Key Data Sources Data ElementsDBP Objective #4: Training professionals to use valid and reliable screening and diagnostic toolsWhat have the DBP programs been doing to train more fellowsto use valid and reliable screening and diagnostic tools?

a. What training is being done regarding the use of valid andreliable screening tools?

b. What training is being done regarding the use of valid andreliable diagnostic tools?

What have the DBP programs been doing to train moremedium-term trainees to use valid and reliable screening anddiagnostic tools?



What have the DBP programs been doing to train non-DBPphysicians to use valid and reliable screening and diagnostictools?





Progress reports

NIRS

Qualitative DataDescription of change in training opportunities since receipt of thesupplemental grant, including changes in curriculum content or clinicalopportunities

Description of the manner in which the program has helped to increasethe number of professionals skilled in providing screening and diagnosisfor children with ASD

Description of any formal or informal collaborations or partnershipsundertaken to increase training of professionals to use valid and reliablescreening tools and to confirm or rule out a diagnosis of ASD

Quantitative DataNumber of trainees: short-term, medium-term, long-termNumber of CE and non-CE training events addressing one or more of thefollowing: early signs of ASD, screening, diagnosis, and/or evidence-based interventions for ASD

Number of professionals trained through CE and non-CE professionaldevelopment activities in one or more of the following: early signs ofASD, screening, diagnosis, and/or evidence-based interventions for ASD

DBP Objective #5: Training professionals to provide advocacy, counseling, and coordination of careWhat have the DBP grantees been doing to train professionalsto provide advocacy, counseling, and coordination of carearound ASD?

a. To what extent have DBP programs helped linkchildren/families with appropriateinterventions/networks of services?

b. What have the DBP grantees been doing to engagetrainees in ASD-related program and policy activities?



Progress reports

Qualitative DataDescription of activities to address patients’ needs with respect toadvocacy,counseling, and coordination of care, including changes in curriculumcontent or clinical or community-based opportunities

Description of activities focused on facilitating communication betweenfamilies of children with ASD and available networks of services andresults of such efforts

Description of activities aimed at engaging trainees in larger, systems-leveladvocacy, counseling, and coordination of care, including participation inState or national level professional associations, State agencies or otherorganizations, and interagency workgroups


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APPENDIX D: DBP INTERVIEW GUIDE 2011

OMB#: 0915-0335

TRAINING

For these questions, we’d like you to tell us about some ways that the supplemental grants have impactedthe training that your program provides, particularly with respect to screening and diagnosis of ASD andother DD.

OBJECTIVE: TRAIN PROFESSIONALS TO EFFECTIVELY UTILIZE VALID AND RELIABLE TOOLS FORSCREENING, DIAGNOSIS, AND INTERVENTION OF ASD AND OTHER DD

Last time we talked about changes to your training program since the supplemental funds were awarded,you mentioned ______. Have there been any changes in the training program since then? Have youcontinued to build on ______? Have there been any new or different training activities since then?

For example:Has the number of long-, medium-, or short-term trainees changed?Has the curriculum for long- or medium-term trainees been modified to include any new content?If so, can you provide one or more examples of some content that has been added since receiving theCAAI supplemental funds (e.g., specific instruments covered, the medium for delivery, and the audiencereached or disciplines trained)?Has there been any change in the kinds of clinical training opportunities that are available to trainees?If not already discussed: Thinking about the bottom line here, can you see any direct impacts of theprofessional training on families or children yet? Any success stories or anecdotes you can share?

OBJECTIVE: TRAIN PROFESSIONALS TO PROVIDE ADVOCACY, COUNSELING, AND COORDINATION OFCARE

How is your DBP program preparing its trainees to address the advocacy, counseling, and coordination ofcare needs of their patients?How have the supplemental grants impacted the training of professionals to provide advocacy,counseling, and coordination of care?Probe: For example, what activities are specifically designed to provide them with the skills andknowledge they may need to assume these roles? To what extent, if any, has your DBP program changedor refined coursework, curricula, or practica, to reflect these skill and knowledge needs?Has your DBP program undertaken any activities focused on building bridges between families ofchildren with ASD and other DD and their available network of services?If not already discussed: Are there any success stories regarding training professionals to provideadvocacy, counseling and coordination of care that you’d like to share?

RESEARCH

Are any of your faculty members or trainees currently involved in planning or conducting any researchstudies relating to ASD and other DD? If yes, please describe the study or studies.

What is the intended outcome of this research? How will the findings be disseminated?


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Probes: What is being investigated? Who is doing the research? What is the anticipated impact of theresults/how might they be used (e.g., will they provide evidence about an intervention’s effectiveness)?Might they contribute to evidence-based practice guidelines? How is the research being funded?Research collaborations?

OBJECTIVE: TRANSLATE RESEARCH ON EVIDENCE-BASED INTERVENTIONS FOR CHILDREN ANDADOLESCENTS WITH ASD AND OTHER DD INTO PRACTICE

A long-term goal of the Combating Autism Act is, once a diagnosis is confirmed, to increase theprovision of evidence-based interventions.

What activities does your program have to support the understanding, use, and application of evidence-based interventions?What activities has your DBP program undertaken to address this objective of translating research intopractice? Such as research guidelines, case studies?Probes: To what extent have the results of these research activities been disseminated?Are there other research activities we haven’t already mentioned? Journal clubs, etc.?

INCREASING AWARENESS

If not already covered: We’ve already discussed the DBP program’s formal training of professionals toprovide skilled screening and assessment for ASD and other DD. In addition to this training, weunderstand that the DBP programs are committed to educating a broad range of MCH professionals andothers about ASD and other DD.

To what extent has your DBP focused on increasing awareness of ASD and other DD amongprofessionals, community members, parents or the public?What, if any, activities has your DBP program performed to increase awareness about ASD and other DDamong this group/these groups?Follow-up questions:What disciplines have been targeted in these awareness building efforts (e.g., practicing pediatriciansaiming to get the latest information on screening, rural health care providers, social workers, educators)?What topics/content areas did these efforts focus on (e.g., early signs and symptoms, evidence basedscreening tools)?If not already discussed: Are there any success stories regarding increasing awareness of ASD and otherDD that you’d like to share?

IMPROVING SYSTEMS OF CARE

What are the major barriers to screening, diagnosis and interventions in your region? Which of thesebarriers, if any, has your DBP program been working to address since receiving the supplemental grant?To what extent has your DBP program reached children from underserved populations with respect to a)screening, b) diagnostic and c) intervention services? Have you developed or carried out any specificplans to reduce barriers to early intervention among underserved children? If so, please describe thoseactivities and any preliminary results you may have observed.Has your DBP program formed any partnerships or collaborations with State Title V or other agencies toprovide ASD-related technical assistance or training? Please describe any outcomes of these partnershipsor collaborations, in terms how they may have contributed to the goal of increasing awareness of ASDand other DD among various interest groups (e.g., health professionals, paraprofessionals, familymembers, advocates, etc.).


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If not already discussed: Are there any success stories regarding improving systems of care that you’dlike to share?

MEETING MCHB’S OBJECTIVES AND WRAP UP

Has your LEND program collaborated with any other CAAI grantees (either other LEND programs orgrantees from the DBP or Research programs) to meet the goals and objectives of this Initiative, or othergoals of MCHB? If so, please describe the nature of the collaboration and any synergies created throughthe collaboration, or expected results.To date, what would you say is the most important thing your program has accomplished with the supportof the CAAI supplemental grant? What has it allowed you to do that you could not have done otherwise?Are there any areas where you fell short of your goals? If so, what challenges prevented you frommeeting the goal or goals? What do you think it would take for you to meet those goals in the future?Alternatively, what’s left to be done in terms of broader goals of early screening, diagnosis, andintervention?Is there anything else you would like to share about your program at this time?


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APPENDIX E: SELECTED ASD-RELATED DBP RESEARCHPRESENTATIONS

Barbaresi, W. (2010). Underdiagnosis of intellectual disability in children with autism: A population-based study. Presented at the annual meeting of the Pediatric Academic Societies, Vancouver,BC.

Blum, N. (2011, April). Developmental delay, autism, and ADHD: An overview. Presented at the ClinicaAlemana de Santiago, Pediatrics Board 2011, Santiago, Chile.

Blum, N. (2008, October). SEARCHing to improve transition to adulthood outcome for individuals withdisabilities. Presented at the annual meeting of the Society for Developmental-BehavioralPediatrics, Cincinnati, OH.

Bridgemohan, C. (2010). Teaching about autism spectrum disorders to residents: A national curriculumdeveloped by the Centers for Disease Control and Maternal and Child Health BureauDevelopmental-Behavioral Pediatrics (MCHB-DBP) programs. Presented at the annual meetingof the Pediatric Academic Societies, Vancouver, BC.

De Vinck-Baroody, O. (2011, March). Overweight and obese status in a sample of children with autismspectrum disorders and serious behavioral problems. Presented at the Maternal and Child HealthBureau Annual Fellowship Training Meeting, Oklahoma City, OK .

Farrell, C.E., Silver, E.J., & Stein, R.E.K. (2011, March in OK and 2011, May in CO). Positive socialbehaviors and parenting stress in autism spectrum disorders and typical development: Are theyconnected? Presented at the annual meeting of the MCHB DBP Programs, Oklahoma City, OK,and the annual meeting of the Pediatric Academic Societies, Denver, CO.

Gupta, A. (July 2010). The genetics of autism. Presented at the Yale Child Study Center Autism ProgramSummer Seminar Series (a nationally offered CME program).

Hanson, E., Davit, C., & Hundley, R. (2009). Increasing blood draw compliance in children with ASD.Presented at the International Meeting on Autism Research, Chicago, IL.

Kruger, H. (2008, May). Autism and developmental screening. Presented as part of a weeklong teachingconference with the Cerebral Palsy team at Teleton, Santiago, Chile.

Kruger, H. (2009, February). Five lectures in Child Development presented at the Open Medical Institutein Salzburg, Austria.

Levy, S.E. (2010, March). Has the prevalence of autism plateaued? Why or why not? Presented at TheSpectrum of Developmental Disabilities XXXIII continuing education event at Johns HopkinsUniversity School of Medicine, Baltimore, MD.

Levy, S.E. (2010, October). Complementary and alternative medicine in children with autism and otherdevelopmental disabilities. Presented at the American Academy of Pediatrics NationalConference and Exhibition, San Francisco, CA.

Levy, S.E., Hyman, S.L., & Peacock, G. (2009, July). Autism spectrum disorders: Identification andtreatment. Webinar, American Academy of Pediatrics, Autism Subcommittee.


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Levy, S.E. (2008, December). How do or should families and caregivers choose treatments for childrenwith autism? Presented at the distinguished lecture series, MIND Institute, UC Davis,Sacramento, CA.

Nelson, C.A. (2010). Early identification of infants at risk for autism. Presented at the annual meeting ofthe Society for Developmental and Behavioral Pediatrics, Boston, MA.

Pappas, D. &, Schonwald, A. (2010). Does adding the M-CHAT to broad-based screening improve earlydetection of autism? Presented at the annual meeting of the Pediatric Academic Societies,Vancouver, BC.

Peacock, G., Weitzman, C., Major, N., Rosenberg, M., & Scharf, R. (broadcast 2011, April) The AutismCase Training (ACT) – A developmental-behavioral pediatrics curriculum. Webinar sponsoredby MCHB and maintained on MCHB Web site.

Pinto-Martin, J., Levy, S., Feldman, J., Lorenz, J.M., Paneth, N., & Whitaker, A. (2010). Screening anddiagnostic prevalence of autism spectrum disorders in adult low birth weight survivors.Presented at the International Meeting for Autism Research, Philadelphia, PA.

Pinto-Martin, J., Levy, S., Feldman, J., Lorenz, J.M., Paneth, N., & Whitaker, A. (2010). Prevalence ofautism spectrum disorder in young adults born at < 2000 grams. Presented at InternationalMeeting for Autism Research, Philadelphia, PA.

Rappaport, L. (2010). Visiting Professor in China speaking on Autism – Beijing University, Institute ofScience, Shanghai Children’s Hospital, Wujii Psychiatric Hospital.

Roizen, N.J., Kuschner, E.S., Sulkes, S.B., Hyman, S.L., Diehl, A., Magyar, C., …Cruschel, C. (2009,May). A population-based study of medical problems in 440 children with Downsyndrome. Presented at the annual meeting of the Pediatric Academic Societies, Baltimore, MD.

Rowberry, J. (2011, March). The first-year inventory as a 12-month assessment measure of ASD risk.Presented at the Maternal and Child Health Bureau Annual Fellowship Training Meeting,Oklahoma City, OK.

Schonwald, A., Bridgemohan, C., Rappaport, L., & Singer, J. (2010). Autism fast track: A quick andefficient program for evaluating young children with suspected ASD. Presented at the annualmeeting of the Pediatric Academic Societies, Vancouver, BC.

Shulman, L. (broadcast 2011, February). Early identification of ASD: An introduction for those who workwith families. Webinar sponsored by AUCD and maintained on AUCD Web site.

Shulman, L., Hottinger, K., Seijo, R., Meringolo, D., & Tarshis, N. (2011, May). Stereotoyped behaviorsand restricted interests in toddlers with ASD: Prevalence and diagnostic significance. Presentedat the International Meeting for Autism Research, San Diego, CA.

Shulman, L., Seijo, R., Hottinger, K., & Valicenti-McDermott, M.D. (2011, May in CO and CA). Earlydiagnosis of ASD in a community sample: Who refers and why? Presented at the PediatricAcademic Societies Meeting, Denver, CO, and the International Meeting for Autism Research,San Diego, CA.


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Tarshis, N., Meringolo, D., Shulman, L., & Hottinger, K. (2011, May). Does the presence of symbolicplay matter in toddlers with ASD? Presented at the International Meeting for Autism Research,San Diego, CA.

Valicenti-McDermott, M.D., Bernstein, L., Burrows, B., Hottinger, K., Lawson, K., Seijo, R., …Shinnar,S. (2011, May in CO and CA). Use of complementary and alternative medicine in children withautism and other developmental disabilities: Associations with ethnicity, child comorbidsymptoms and parental stress. Presented at the Pediatric Academic Societies Meeting, Denver,,CO and the International Meeting for Autism Research, San Diego, CA.

Weitzman, C. (2011, May). Autism Case Training (ACT): A developmental-behavioral pediatricsapproach. Presented at the annual meeting of the Pediatric Academic Societies, Denver, CO.

Weitzman, C. (2010, September). Autism Case Training (ACT): A developmental-behavioral pediatricsapproach: Update. With Peacock, G., Bridgemohan, C., & Thomas, J. Presented at the annualmeeting of the Society for Developmental Behavioral Pediatrics, Boston, MA.


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APPENDIX F: SELECTED ASD-RELATED DBP PUBLICATIONS

Brandwein, A.B., Foxe, J.J., Russo, N., Altschuler, T., Gomes, H., & Molholm, S. (2011). Thedevelopment of audiovisual multisensory integration across childhood and early adolescence: Ahigh-density electrical mapping study. Cerebral Cortex, 21(5), 1042-1055.

Bridgemohan, C. (2011). Surveillance and screening for autism spectrum disorders in primary care. InBasow, D.S. (Ed.), UpToDate, Waltham, MA.

Buie, T., Campbell, D.B., Fuchs, G.J., Furuta, G.T., Levy, J., Vandewater, J., …Winter, H. (2010).Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASD: aconsensus report. Pediatrics, 125(Suppl 1), S1-18.

De Vinck-Baroody, O., Nyirabahizi, E., Lagges, A.M., Leventhal, J.M., Weitzman, C., & Scahill, L.Overweight & obese status in a sample of children with autism spectrum disorders & seriousbehavioral problems. Unpublished manuscript, Research Units on Pediatric PsychopharmacologyAutism Network, Yale University, New Haven, CT.

Durkin, M.S., Maenner, M.J., Meaney, F.J., Levy, S.E., DiGuiseppe, C., Nicholas, J.S., …Schieve, L.A.(2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from aU.S. cross-sectional study. PLoS ONE, 5(7), e1151.

Ercan-Sencicek, A.G., Stillman, A.A., Ghosh, A.K., Bilguvar, K., O’Roak, B.J., Mason, C.E., …State,M.W. (2010). L-histidine decarboxylase and Tourette’s syndrome. New England Journal ofMedicine, 362(20), 1901-1908.

Giarelli, E., Wiggins, L.D., Rice, C.E., Levy, S.E., Kirby, R.S., Pinto-Martin, J., & Mandell, D. (2010).Sex differences in the evaluation and diagnosis of autism spectrum disorders among children.Disability and Health Journal, 3(2), 107-116.

Gupta, A.R., & State, M. Identification of candidate genes at the synapse in autism spectrum disorders.Unpublished manuscript, Yale University, New Haven, CT.

Hanson, E., Nasir, R.H., Fong, A., Lian, A., Hundley, R., Shen, Y., …Miller, D.T. (2010). Cognitive andbehavioral characterization of 16p11.2 deletion syndrome. Journal of Developmental andBehavioral Pediatrics, 31(8), 649-657.

Huang, P., Kallan, M.J., O’Neil, J., Bull, M.J., Blum, N.J., & Durbin, D.R. (2009). Children with specialhealth care needs: Patterns of safety restraint use, seating position, and risk of injury in motorvehicle crashes. Pediatrics, 123(2), 518-523.

Jeste, S.S., & Nelson, C.A. (2009). Event-related potentials in the understanding of autism spectrumdisorders: An analytical review. Journal of Autism and Developmental Disorders, 39(3), 495-510.

Levy, S.E., Giarelli, E., Lee, L., Schieve, L.A., Kirby, R.S., Cunniff, C., …Rice, C.E. (2010). Autismspectrum disorder and co-occurring developmental, psychiatric, medical conditions amongchildren in multiple populations of the United States. Journal of Developmental BehavioralPediatrics, 31(4), 267-275.


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Levy, S. Kruger, H., & Hyman, S. (2008). Treatments for children with autism spectrum disorders. InCapute & Accardo (Eds.), Neurodevelopmental disabilities in infancy and childhood. 3rd edition,Paul H. Brookes Publishing, MD.

Levy, S.E., Mandell, D.S., & Schultz, R.T. (2009). Autism. The Lancet, 374(9701), 1627-38.

MacFerran, K., Major, N., Fussell, J., & High, P. (2011). Making a diagnosis. In Autism Case Training(ACT): A Developmental-Behavioral Pediatrics Approach. Part of National Autism Curriculumdeveloped in partnership with Centers for Disease Control and Prevention and Maternal andChild Health Bureau. Weitzman, C., Peacock, G., Thomas, J. (Eds.). Athttp://www.cdc.gov/ncbddd/actearly/ACT/class.html.

Mahoney, G., Wiggers, B., Nam, S., Kralovic, S., & Perales, F. Effectiveness of responsive teaching withyoung children with PDD: Impact of parental psychological status and responsiveness.Manuscript submitted for publication.

Molholm, S., & Foxe, J.J. (2010). Making sense of multisensory integration. European Journal ofNeuroscience, 31(10), 1709-1712.

Nelson, C.A., & McCleery, J.P. (2008). The use of event-related potentials in the study of typical andatypical development. Journal of the American Academy of Child and Adolescent Psychiatry,47(11), 1252-1261.

Roberts, T.P., Cannon, K.M., Tavabi, K., Blaskey, L., Khan, S.Y., Monroe, J.F., …Edgar, J.C. (2011).Auditory magnetic mismatch field latency: A biomarker for language impairment in autism.Biological Psychiatry, 70(3), 263-9. Epub March 9, 2011.

Roberts, T.P.L., Khan, S.Y., Monroe, J.F., Cannon, K., Blaskey, L., Qasmieh, S., …Edgar, J.C. (2010).MEG detection of delayed auditory evoked responses in autism spectrum disorders: Toward animaging biomarker for autism. Autism Research, 3(1), 8-18.

Rowberry, J., Weitzman, C., Leventhal, J.M., Chen, G., & Chawarska, K. The first year inventory as a12-month assessment measure of ASD risk. Unpublished manuscript, Yale University, NewHaven, CT.

Russo, N., Foxe, J.J., Brandwein, A., Altschuler, T., Gomes, H., & Molholm, S. (2010). Multisensoryprocessing in children with autism: high-density electrical mapping of auditory-somatosensoryintegration. Autism Research, 3(5), 253-267.

Sanders, S.J., Ercan-Sencicek, A.G., Hus, V., Luo, R., Murtha, M., Moreno-De-Luca, D., …State, M.W.(2011). Recurrent de novo copy number variations (CNVs) at 7q11.23, 15q11.2-13.1, 16p11.2,and the Neurexin 1 (NXRN1) locus are strongly associated with simplex autism. Neuron, 70(5),863-885.

Scharf, R., Rosenberg, M., Sia, J.H., & Pappas, D. (2011). Screening for autism. In Autism Case Training(ACT): A Developmental-Behavioral Pediatrics Approach. National Autism Curriculumdeveloped in partnership with Centers for Disease Control and Prevention and Maternal andChild Health Bureau. Weitzman, C., Peacock, G., & Thomas, J. (Eds.). Athttp://www.cdc.gov/ncbddd/actearly/ACT/class.html.


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Schonwald, A., Chan, E., Huntington, N., Risko, W., & Bridgemohan, C. (2009). Routine developmentalscreening implemented in urban primary care settings: Evidence of feasibility and efficacy.Pediatrics, 123(2), 660-668.

Sell, N., Levy, S., Blum, N.J., Hanlon, A.L., & Giarelli, E. A comparison of autism spectrum disorderDSM-IV criteria and associated features among African-American and White children inPhiladelphia County. Manuscript submitted for publication.

Shen, Y., Dies, K., Holm, I., Bridgemohan, C., Sobeih, M., Caronna, E., …Miller, D., and on behalf ofthe Autism Consortium Clinical Genetics/Diagnostics Collaboration. (2010). Clinical genetictesting for patients with autism spectrum disorders. Pediatrics, 125(4), e727-735. Publishedonline March 15, 2010.

Souders, M.C., Mason. T.B., Valadares, O., Bucan, M., Levy, S.E., Mandell, D.S., …Pinto-Martin, J.(2009). Sleep behaviors and sleep quality in children with autism spectrum disorders. Sleep,32(12), 1566-78.

Tierney, A.L., Gabard-Durnam, L., Vogel-Farley, V., Tager-Flusberg, H., & Nelson, C.A. Neuralsynchrony as a signature of autism spectrum disorder risk. Biological Psychiatry.

Weissman, L., & Bridgemohan C. (2010). Management of autism spectrum disorders: Overview. InBasow, D.S. (Ed.), UpToDate, Waltham, MA.

Weissman, L., & Bridgemohan, C. (2010). Management of autism spectrum disorders:Psychopharmacology. In Basow, D.S. (Ed.), UpToDate, Waltham, MA.

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