History and Future of the Early Access for

History and Future of the Early Access for Care – Arizona Program Richard E. Frye, M. D. , Ph. D. Chief, Section on Neurodevelopment Disorders Director, Autism and Fragile X Programs Barrow Neurological Institute at Phoenix Children's Hospital, Phoenix AZ

Disclosures • Dr Frye is on the Advisory Board for the following companies: • Iliad Neurosciences, Plymouth Meeting PA • Cox Biosciences, New York, NY • Neuro. Needs Inc, Old Lyme, CT

Autism in the U. S. • About 1 in 59 children in the U. S. • 1 in 71 in Arizona • ASD is reported to occur in all racial, ethnic, and socioeconomic groups • ASD is about 4 times more common in boys than among girls • Recurrence risk in siblings = 2%-18% Autism and Developmental Disabilities Monitoring Network, CDC, 2014

Early Access to Care – Arizona (EAC – AZ) Mission • Decrease time between parent concern and time of diagnosis • Train PCP’s to provide diagnosis and comprehensive care to children with ASD • Increase the accessibility of subspecialty support, in rural/remote areas via telemedicine • Increase the number of children with ASD who receive care in medical home

Snapshot of EAC – AZ The Early Access to Care – Arizona program was founded and created by Dr. Robin Blitz. Thanks to a generous donation spanning from 2015 -2017 from the Board of Visitors, the EAC – AZ program: • Established as an innovative, community-based integrated identification, screening, and treatment model, using the primary care physicians (PCP) and a regional team of Az. EIP and School personnel and/or a PCP staff. • Provided training to PCPs on the identification and diagnosis of Autism Spectrum Disorder (ASD), as well as medical home care to children with ASD. • Assessed the PCP’s readiness for medical home provision, specifically increasing competence and confidence in diagnosing and treating the unique needs of children with ASD. • Developed a telemedicine subspecialty support network for rural community PCPs.

EAC-AZ Regional Teams Cohort 1 Cohort 2 Cohort 3

PCP’s trained in EAC-AZ • Cohort 1 • 15 started, 9 completed • 1 moved out of state • Cohort 2 – • 11 started, 5 completed • Cohort 3 – • 17 started, 2 completed • Total = 44 Started • 16 Completed • 28 Did not Complete

ADOS trainees • Cohort 1 • 27 • Cohort 2 – • 17 • Cohort 3 – • 45 started • Total = 89

EAC – AZ Providers Survey Completer (N = 16): 9 Responded, 56% Non-Completer (N = 28): 7 Responded 25%

Completers, N = 9 AVERAGE PROFICIENCY RATING 5 4, 5 7 1 1 4 5 9 5 4 Proficiency 5, 00 4, 56 4 4, 67 3, 75 3, 5 3 2, 5 2 1, 5 1 MCHAT STAT DSM-V DOC-FX-LIMIT 55, 6 % 5 44, 4 % 4 YES 0% Provider? NO 20% 44, 4 % 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% AVERAGE CONFIDENCE RATING 1 always sometim es never 0% 11, 1% 8 11, 1 % 55, 6 % never 20% 11, 1 % ADOS Frequency sometim es 40% 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% always 40% 100 Frequency % never 60% 55, 6 % 44, 4 % 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% sometim es 60% Frequency always 80% 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% never 80% Frequency 77, 8 % sometim es %N 100% 88, 9% DSM-V always Frequency 100% STAT MCHAT – screen follow up always sometim es never MCHAT – well child visit DOCUMENT FUNCTION LIMITATIONS Confidence 3, 67 ADOS

Non-Completers, N = 7 Provider? 71, 4 % 28, 6 % 2 5 YES NO 2 never 5 sometimes 28, 60 % always never 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 71, 40 % 4, 86 2, 00 1, 50 1, 00 MCHAT 14, 3% 1 6 5 2, 50 4 3, 00 85, 7% 3 3, 50 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 2 4, 00 1 4, 50 Proficiency Frequency %N AVERAGE PROFICIENCY RATING 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 7 5, 00 ADOS MCHAT – screen follow up Frequency 100, 0% sometimes 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% always %N MCHAT – well child visit

Completers, N = 9 1. How many patients have you diagnosed with Autism Spectrum Disorder using your training in the Early Access to Care – Arizona (EAC-AZ) Program? Average = 20. 13 patients MIN 23 8 MAX 50 10 25 # of patients

Completers, N = 9 15. Estimate the percentage of children you diagnosed with autism who were able to obtain services from the Department of Developmental Disabilities (DDD) ______% Average = 65. 65% MAX 70 30 50 80 MIN 80 5 % of patients

Are you still interested in completing your Early Access to Care - Arizona (EAC-AZ) training to provide diagnosis of Autism Spectrum Disorder to patients? Completers Non-Completer 100% - Yes 100% - No

EAC-AZ The Future

Current Screening Methods for ASD • Level 1 or universal screen such as the MCHAT-R: • Very good at picking up children who need more workup • High false positive for ASD • Anxiety in parents and longer wait times • Level 2 – Disorder-specific screener • Differentiates between ASD and other delays • Referrals for ASD evaluations more appropriate v. Interactive Level 2 ASD screeners preferred to questionnaires èTriggers atypical behaviors

Two-Level ASD Screening Model Level 2 Level 1 Risk ASD+++ High-Risk for Developmental Delays/ASD (Positive Level 1, or special groups: NICU grads, siblings. . ) Well Child Visits

Current Interactive Level 2 ASD screeners STAT: Screening for Autism in RITA-T: Rapid Interactive Screening Autism in Two year olds) 20 minutes to administer Difficult training Good psychometrics for 2 -3 y old Initial validation on small samples (2000; 2004) in tertiary care hospital Less good for < 2 y Misses mild to moderate forms of ASD (on DSM-IV) High Costs • • Toddlers (prev. Screening Test for • • Test for Autism in Toddlers 5 -10 minutes to administer and score Reliable training in 3 hours Good psychometrics for 18 -36 months Large validation samples and generalization of psychometrics • Good discrimination of ASD vs. Non ASD • Training to be accessible: currently: • Kit is $60; • Online training $175 includes scoring sheets and manual • Working on other options to decrease further costs

Prevalence 2% in General Population 100 Children Level 1 Screening M-CHAT-R Sensitivity 91% Specificity 96% Positive Predictive Value 32% Negative Predictive Value 100% 6 Children Will Screen Positive 2 of the 6 Will Have ASD 4 will not have ASD Enriched Prevalence to 33% Gold Standard Diagnostic Testing ADOS or ADI-R Positive Predictive Value 83% Negative Predictive Value 94% Level 2 Screening STAT or RITA Sensitivity 92% Specificity 85%

New EAC-AZ Program • Developing a new Curriculum • Developing New Tools to Help Pediatricians • Developing a network of Diagnostic • Assistance for Specialized Tests • Developing Resource for Pediatricians

(MD/NP) Fail (MD/NP) Developmental Screening Surveillance M-CHAT-R/F (<= 30 m) PEDS SCQ (>30 m) Age and Stages SARRC Question Significant Delays Or Qualifying Syndrome Refer as AZEIP (DES) ‘At Risk’ DDD For Services Health Plan under EPSDT School Behavioral Health (MD/NP) Diagnostic Report [Template Including DDx] Failed (Trained Evaluator) VABS [Functional Limitations] Fail (MD/NP) RITA-T (<= 36 m) or STAT (<=36 m) After 36 m ? CARS Failed (Trained Evaluator) ADOS [Confirm Diagnosis]

Certification of Knowledge • Attend Annual EAC-AZ Conference • Complete Reading of Peer Reviewed Literature and Correctly Answer Questions • Attend Regular Training Webinars • 6 Live Webinars • Recorded webinars will be posted to the EAC-AZ website • Materials distributed at the beginning of month • Webinar occur the 2 th Tuesday of the month at 6: 00 pm • Case Discussions occur the 4 th Tuesday, 6: 00 pm • Bring at least one case to a Case discussion Certification of Tools • RITA-T –Webinar Training • ADOS – Webinar Training

Webinars 1. Proficiency on the Ages and Stages (February) 2. Proficiency on the M-CHAT-R/F (March) 3. Proficiency on the RITA-T: a Secondary Screener (April) 4. Understand the Use and Scoring of the Adaptive Behavior Scales (May) 5. Understanding the Screening and Diagnostic Process, the DSM Criteria for Autism (June) 6. The Differential and Co-occurring Diagnoses Associated with Autism (July) 7. Understand the Use and Scoring of the ADOS, ADI-R & NODA (August) 8. Billing and Clinic Workflow (September)

Certification of Application • Use Appropriate Testing Methods to Screen and Document the Diagnosis of Autism • Provide 5 Completed Clinical (anonymized) evaluations of clinic patients • Document Successful Referrals to Service Providers CME and MOC Each Webinar will provide CME Credit (Need to Fill Out Survey at the End) • For MOC need to answer questions about how many patients screened for autism in your practice •

1. January (Dr. Richard Frye & Dr. Mark Wilson): Introduction to EAC-AZ 2. February (Dr. Clifford Gross): Proficiency on developmental screening tools - Ages and Stages (ASQ), Parent Evaluation of Developmental Status (PEDS), and other common tools a. Complete reading of peer reviewed literature and correctly answer questions, and b. Provide clinical examples of interpretation and application of results in the clinic 3. March (Dr. Kathleen Shefner): Proficiency on screening for Autism in infancy and early childhood: M-CHAT-R/F, CSBS, and other screening tools a. Complete Reading of peer reviewed literature, correctly answer questions, and b. Provide clinical examples of interpretation and application of results in the clinic c. Introduction of the Autism Clinic Template Visit 1 4. April (Dr. Joel Hanania): Proficiency on the RITA-T: A secondary screener a. Complete certifying course (online), and b. Provide clinical examples of interpretation and application of results in the clinic 5. May (Dr. Mark Wilson): Functional limitations and using Adaptive Behavior Scales a. Complete reading of peer reviewed literature and correctly answer questions. b. Understand the use and scoring of the Adaptive Behavioral Scales

6. June (Dr. Richard Frye): Making the Diagnosis of Autism a. Complete reading of peer reviewed literature and correctly answer questions. b. Using the DSM Criteria for Diagnosing Autism Complete reading of peer reviewed literature and correctly answer questions c. Breaking the News in a Sensitive Manner with Dr. Raun Melmed 7. July (Dr. Joel Hanania): The Differential Diagnoses Associated with Autism a. Complete reading of peer reviewed literature and correctly answer questions b. Understand Differential Diagnosis of ASD 8. August (Dr. Christopher Smith): Gold Standard of Diagnostic Testing a. Complete reading of peer reviewed literature and correctly answer questions b. Understand the use and scoring of ADOS, ADI-R and NODA 9. September (Dr. Clarisa Smith): Billing and Clinic Workflow a. Complete reading of peer reviewed literature and correctly answer questions b. Understand Billing and Application of Workflow to Clinic

MOC Part 4 Quality Improvement Project: Treatment and Diagnosis of Autism • Document performance of ASD screening and referral of 20 patients at three time points • Before (or Beginning) of EAC-AZ Program • Can go back 6 months with chart review • Middle of the Program (About April) • After the Program is Done (August)

Answer Four Questions • How many patients had a primary ASD screener? • How many screens were positive? • Of those positive screenings, how many were diagnosed with ASD? • Of those diagnosed with ASD, how many were successfully referred to services?