Detecting Autism Early

A Pilot to Train Providers, Screen Toddlers, and

Support Families with Autism Concerns in Primary
Care

Brittany Powers, MPH Colleen Sherman, PhD

University of Delaware Nemours A.I. duPont
Center for Disabilities Studies Hospital for Children
 Co-Authors
Brian Freedman, PhD
University of Delaware Center for Disabilities Studies

Emily Bernabe, PhD

Nemours A.I. duPont Hospital for Children

Zachary Radcliff, PhD

Nemours A.I. duPont Hospital for Children

Jessica Lorenzo-Gaier, PhD

Nemours A.I. duPont Hospital for Children

Susan Giancola, PhD

University of Delaware Center for Research & Education in Social Policy

Shameeka Jelenewicz, MA
University of Delaware Center for Research & Education in Social Policy
 Outline
• Background
• Primary Care Provider M-CHAT-R Training
• Workflow & Referral Processes
• Integrated Behavioral Health Consults
• Progress & Data
• Next Steps & Considerations
Background
Building Bridges
Legislative Authority: Autism CARES, Combating Autism Act of 2006, Public Law No. 109-416
Funding Agency: Health Resources & Services Administration: Maternal & Child Health Bureau
Grant Title: State Implementation Grants for Improving Services for Children and Youth with
Autism Spectrum Disorder (ASD)
Start Date: 9/1/16
End Date: 8/31/19
Targeted Population: Families of children under 37 months at risk for ASD, particularly families
living in Sussex County and Latino families.
Building Bridges
Partners:
University of Delaware Center for Disabilities Studies
Autism Delaware
Nemours/AI duPont Hospital for Children
Delaware Family Voices
Department of Education
Division of Public Health
Birth to Three/Part C
…and more!
Building Bridges
Goals
1. Create a coordinated, comprehensive, family-centered and culturally competent system of
care for all young children in Delaware with Autism Spectrum Disorder and other DD
2. The Delaware State Plan will be implemented and sustained through coordination and
collaboration of all ASD stakeholders in Delaware with emphasis on family participation.
3. Increase the number of Delaware children at-risk for ASD who receive appropriate screening,
evaluation, diagnosis, and referral and enroll in services before the age of 37 mos.
4. Families will have increased knowledge, skill and self-efficacy in family-centered care
specifically related to referrals, diagnosis and access to services.
Recommendations for Screening
Conduct standardized developmental and behavioral screening at:
9, 18, and 24 or 30 month well visits (American Academy of Pediatrics)

Conduct autism-specific screening at:

18 and 24 month well visits (AAP)
• Developmental and behavioral screening tools are
used broadly and often lack the sensitivity to screen
specifically for autism

• Children with autism have best outcomes when exposed

early to autism-specific, evidence-based interventions
Autism-Specific Screening
Room for improvement…
In Delaware, about 1/3 of children aged birth to three were tested with the PEDS Online in 2016
Only 18.1% of those children also receive autism-specific screening

Tested
with M-
Kids CHAT
0-3 in
PEDS
Primary Care Provider
M-CHAT-R Training
Initial Survey
• Online survey developed to assess current developmental and autism-specific screening
practices
• Partnership with Delaware AAP
• Survey emailed to all AAP members
Survey Results
• ~ 30 providers responded
• Most reported conducting developmental and autism screening at recommended guidelines
Survey Results
Reported barriers to screening: Reported barriers to serving children with
ASD:
1. Time
2. Staff requirements 1. Behavior in office
3. Language 2. Lack of available specialty care
4. EMR compatibility 3. Knowledge of autism therapies
4. Delay in available appointments for
developmental care
Expert Interviews
• A total of 7 primary care provider interviews were conducted
• In-depth information about screening practices, barriers, training/resource needs

What type of content

Where do you refer would be most helpful in
patients once they have a training about
screened at-risk? developmental screening
and autism?
Expert Interview Results
• Interviews were analyzed for themes
• Training needs identified
1. Training on PEDS and M-CHAT-R
2. General education on ASD and “red flags”
3. Billing and reimbursement for screening
4. Initiating conversations with and supporting parents
Developing Training
• Catered training to the primary care site
 Nemours duPont Pediatrics, Shipley St.
 Located in rural, underserved region of Delaware

• Create a tiered level training approach

 Tier 1: All staff
 Tier 2: Providers
Training
TIER 1 (ALL STAFF) TIER 2 (PROVIDERS)

• Discuss why we screen & screening • Education on typical developmental

recommendations milestones
• Review & emphasize existing screening •Education on ASD & early red flags
practices
• M-CHAT-R review & follow-up interview
• Introduce autism screening with M-CHAT-R/F
• Referrals & resources
• Review workflow

• Difficult conversations
• Supporting families
Family Perspective
• Parents of children with autism presented in the trainings to share their stories
• Talk about both positive and negative experiences
• Inform providers about importance of detection and conversations

 Incredibly well-received and appreciated providers

Family Perspective
Special thanks to Kendra Haynes, Family Member LEND Trainee, for this video’s production.
Show video clip
Building M-CHAT-R into EMR
• Support of Nemours partners at Swank Autism Center
• Nemours’ EMR Taskforce created a flowsheet in EPIC for the M-CHAT-R
• Entered by a medical assistant and automatically scored for provider
M-CHAT-R in EPIC
Workflow &
Referral Processes
Office Workflow
1. Parent completes PEDS and M-CHAT-R as MA enters into EPIC
2. Screening tools scored automatically
3. Provider reviews scores
4. Ask any clarifying questions
5. Discuss results with family
6. Make referrals for developmental follow-up, as necessary
7. Provide parent with resources (Learn the Signs. Act Early.; DD and/or ASD risk handout)
8. Billing code: 96110, modifier -25 or -59 (private payer)
 Office Workflow
Low Risk Patients
Order M-CHAT-R Provide
and Associate Ask Guardian Document Finalize Order in Information and
Diagnosis Z13.4 Developmental Results in Enter/Edit Referral, if
Questions Progress Note
(18 & 24 months) Necessary

High Risk Patients

Order M-CHAT-R Provide
and Associate Ask Guardian Document Finalize Order in Information and
Diagnosis Z13.4 Developmental Results in Enter/Edit Referral for
Questions Progress Note
(18 & 24 months) Evaluation
 Office Workflow
Medium Risk Patients

Order M-CHAT-R Provide

Ask Guardian Document Conduct Follow-
and Associate Finalize Order in Information and
Developmental Results in up Interview
Diagnosis Z13.4 Enter/Edit Referral if
Questions Progress Note M-CHAT-R/F
(18 & 24 months) Necessary
Integrated Behavioral
Health Consults
Revisiting Barriers
• Staff workload
• Wait times for follow-up to concerns
• Practice is located in a rural area
• Transportation
• Very few local specialty providers
• Nemours Swank Autism Center located over 90 miles away

• Early identification AND intervention improves outcomes for children with ASD
Integrating Support in Primary Care
• Pilot behavioral health consults for children with autism concerns at a local primary care office
• Role of behavioral health:
Further autism assessment
Level 2 screening
Clinical observation
Parent interview
Therapy and intervention
Direct referral to telehealth intervention
 Stepped Care Model
Children Scoring High Risk on M-CHAT-R

Order M-CHAT-R
and Associate Ask Guardian
Document Results Finalize Order in Refer: Behavioral
Diagnosis Z13.4 Developmental
in Progress Note Enter/Edit Health & CDW
Questions
(18 & 24 months)

Child Development Watch (CDW) is Delaware’s statewide early intervention

program for children birth to 3.
 Stepped Care Model
Children Scoring Medium Risk on M-CHAT-R

Order M-CHAT-R
Ask Guardian Conduct Follow-
and Associate Document Results Finalize Order in
Developmental up Interview
Diagnosis Z13.4 in Progress Note Enter/Edit
Questions M-CHAT-R/F
(18 & 24 months)
Medium Risk:
Provider completes follow-up interview

Concerns: No Concerns:
Refer to BH & Document &
CDW continue to
follow
Medium Risk:
Nurse completes follow-up interview by phone

Concerns: No Concerns:
Refer to BH & Document &
CDW continue to
follow
Medium Risk:
Provider/parent concerns, need for additional follow-up

Refer to Refer to
BH CDW
Role of Telehealth
• Supervision

• Increased access

• Increased capacity

• Sustainability
Progress & Data
Behavioral Health Consults
Total of 12 referrals for autism concerns
• Of those, 7 behavioral health consults
Family Concerns • Ages ranged from 1.6 – 12.1 years Outcomes
1 1

1 3

6
2
Referral for Formal Evaluation No Evaluation
ASD DD Social Emotional
Behavioral Health Consults
Diagnosis
4.5
4
4
3.5
3
2.5
2
1.5
1 1
1
0.5
0

ASD ADHD Adjustment w/ Anxious Mood

Note: One child has an upcoming autism evaluation in August 2019.

Staff Surveys
Key Takeaway: Overall promising results following the pilot program
• Post-survey results showed an increase in:
 # of developmental screenings conducted in the past 3 months
 % of children receiving developmental screenings
 # of respondents performing ASD screenings using a validated tool
 % of children receiving ASD screenings
 Familiarity with community programs and resources

• All respondents reported that their practice had changed as a result of the pilot
Next Steps & Considerations
• Replicating pilot among other primary care offices

• Will continue to consider the standard of care and how this fits into different clinic work-flows

• Continued training of PCPs and Integrated Behavioral Health psychologists

 Questions?
Brittany Powers Colleen Sherman
bblument@udel.edu colleen.sherman@nemours.org