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Increasing Access to Autism Spectrum

Disorder Assessment Services for Children


Under Three Through Part C Clinics

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

Allyson Davis, PhD


Nemours A.I. duPont Hospital for Children

Zachary Radcliff, PhD


Nemours A.I. duPont Hospital for Children
Outline
• Building Bridges & Goals
• Autism in Delaware
• Integrating Autism Assessments in Part C Clinics
• Progress
• Next Steps & Sustainability
Building Bridges
IMPROVING ACCESS TO TIMELY AND APPROPRIATE ACCESS TO
SERVICES FOR CHILDREN WITH ASD/DD AND THEIR FAMILIES
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.
Building Bridges
• Autism Spectrum Disorder (ASD) has been increasing in prevalence, with current estimates at 1 in 59
children (Baio et al., 2018)

• Early identification and intervention has been shown to improve outcomes across domains for
children diagnosed with ASD (Warren et al., 2011)

• However, children in rural and underserved areas are less likely to be diagnosed before school age
and often do not have access to appropriate autism-specific services (Daniels & Mandell, 2014)

• Extended wait times after initial concerns have also impacted the early diagnosis of young children
and contribute to negative family experiences (Zablotsky et al., 2014)
Autism in Delaware
Medical Diagnosis of Autism
• Primary resource for diagnostic services in Delaware has historically been Nemours/A.I. duPont

• Families located in rural areas (e.g., Sussex county) are often required to travel long distances
and overcome additional barriers in order to access these services

• Average age of ASD diagnosis in Delaware was recently shown to be 5.2 years
(Ekbladh & Rhoton, 2013)

• Young children are missing critical windows for receiving intensive,


autism-specific interventions
Autism Birth Mandate
The IDEA Part C system is responsible for providing evaluations and appropriate early
intervention services to children under 3 years with developmental delays and disabilities
• In Delaware, Autism is one of four Birth Mandates
• For children under 3 identified with or having concerns for birth mandate classifications, local
school districts are also responsible for:
o conducting evaluations
o determining eligibility, and
o when eligible, ensuring access to free and appropriate public education and school-based services.

• When concerns for autism arise, families have the right to evaluations through both Part B and
Part C, but may only receive services from one
Understanding Educational Eligibility and
Medical Diagnosis of Autism
Building Bridges
• Streamlining the Process
• Collaboration between Part C and Nemours
• DOE development of guidance for autism referrals

• Increasing Access to Early Evaluations


• Underserved Kent and Sussex Counties
• Reduction of barriers
• Birth to Three population
Integrating Autism
Assessments in Part C Clinics
Child Development Watch
• Delaware Part C: Child Development Watch (CDW) clinics
• Child Development Watch (CDW) provides assessments, service coordination, Individualized Family
Service Plans, and referrals to community services, to families of children with disabilities or
developmental delays (DHSS, 2019)

• CDW North
• Serves families in New Castle County

• CDW South
• Serves families in Kent and Sussex Counties
Support at CDW South
Building Bridges grant funds a Nemours post-doctoral psychologist and LEND trainee to conduct
comprehensive diagnostic autism evaluations at CDW South two days per week
• Focus on medically underserved regions of the state
• Kent and Sussex Counties

• Increase access to early evaluations


• 0 – 3 population served by CDW
• Reduce barriers (time, transportation, waitlists, insurance)
Assessment
• CDW evaluation team conducts a Multidisciplinary Assessment (MDA) to determine eligibility
• MDA assesses five core domains of development

Cognition Physical/motor Communication

Social-
Adaptive
emotional
Concerns for Autism
• When concerns for autism arise during the MDA or from parent or provider concern, referral
for comprehensive autism evaluation is required

Referral to:

Local Education CDW S on-site


Agency Psychologist

Evaluation for Evaluation for


Special Education medical diagnosis
eligibility of autism

School-based Medicaid, Part C,


services private services
Autism Assessment at CDW South
• Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2)
• Toddler Module or Module 1 based on age
• Autism Spectrum Rating Scales (ASRS)
• Parent Form
• Childhood Autism Rating Scale, Second Edition
• Standard Form (CARS2-ST)
• Review of available evaluations, including MDA and school team evaluation
Autism Assessment at CDW South
• Family Feedback session scheduled within two weeks following assessment
• Provide diagnosis and recommendations, which are detailed in a report for the family
• Families who seek school district services also sign consent for the report to be shared with their local
district

• Assessment report outlines clinical recommendations, as well as recommendations for school-


based services
• Report developed with collaboration between Nemours and Delaware Department of Education
Progress
Autism Assessments Conducted
September 2017 – July 2019
140
129

120
104 (80.6%)
100

80

60

40

20

Children Assessed Children Diagnosed


Average Age of Autism Diagnosis

Delaware 2013 5.5 years

CDW South 2017-2019 2.3 years

0 1 2 3 4 5 6
Average Wait Time for Evaluation

4-6 weeks
Diagnosis Totals by County
80

70 67 (64.6%)

60

50

40 37 (35.6%)

30

20

10

Kent County Sussex County


Transition to School Services
Families who pursued an evaluation for Special Education Services via an
Autism Classification (n=80 children with ASD)
90
80
70 16 (20%)

60
50
40
30 64 (80%)

20
10
0

Eligible, Autism Classification Not Eligible


CDW South Staff Perspectives
“The way we’re doing it now seems to I think help expedite things and move things
along much quicker to have a better end result.”

“People that live in Dover and Smyrna can come right to Dover. People that live in
Milford, Georgetown, Sussex County can go to Milford. It's easier, more convenient for
those families. And I think it's a more cohesive process when they can be here with [an
autism expert] on staff.”

“There are huge benefits to having the medical. Without the medical diagnosis, I can’t
get the kid stable child’s Medicaid, I can’t get this child SSI, and I can’t get them ABA
therapy services outside of the school setting.”
Next Steps & Sustainability
Statewide Commitment
 Regular meetings with Delaware Division of Public Health (DPH) and CDW leadership

 Commitment from DPH for continuing autism assessments at CDW statewide

 Discussion of ongoing partnership between CDW and Nemours


Statewide Collaboration
 Identifying statewide training needs for CDW staff

 Collaboration between CDW, UD, Nemours, and Delaware Network for Excellence in Autism for
ongoing technical assistance

 Collaboration between Part B and Part C to ensure streamlined processes for referrals and
evaluations for autism

 Meetings with school districts statewide to inform of the new service and processes
Considerations
 CDW South and CDW North will have very different training needs
 CDW South will have two years completed with this process
 CDW North will be launching an entirely new process

 Reduced time dedicated to autism assessments may affect wait times


 DPH will provide support (funds) for an on-site psychologist at CDW North and South
 Psychologists will be tasked with:
1. Conducting diagnostic autism evaluations
2. Providing behavioral health consultations
Questions?
Brittany Powers Colleen Sherman
bblument@udel.edu colleen.sherman@nemours.org