Transcript Slide 1

Autism Speaks &
The Early Access to Care Initiative
Jamitha Fields
Autism Speaks
Collaborators: Rosa Avila, Christina Bethell, Amy Daniels
AUCD 2014
November 11, 2014
The power of early intervention
• The bottom line: the earlier we can intervene in a
child’s life, the better
• How?
– Intensive behavioral interventions: trained therapist working
1:1 w/ child, multiple hours/week
• Evidence-based behavioral interventions can
significantly impact a child’s
–
–
–
–
Cognition
Adaptive behavior
Social interaction
Language
• Mounting evidence of long term benefits
The path to early intervention
Surveillance
Screening
Diagnosis
Early
Intervention
The main challenges
 Delayed diagnosis
Large gap between age at which reliable diagnosis of autism can be
made (24 months) and average age at diagnosis (4-5 years)
 Ethnic disparities in identification and diagnosis
Racial and ethnic minorities are identified less frequently and
diagnosed later than white counterparts.
 Culturally-specific barriers may compound structural
barriers to care
Early Access to Care
 Organization-wide
initiative to lower the
age at diagnosis and
increase access to
EI services
 Focus on underserved
populations
 Awareness
campaign with the Ad
Council (PSA Central)
Early Access to Care
Early Access to Care
Early Access to Care
 Resources for professionals
 http://www.autismspeaks.org/earl
y-access-care/professionals
 Screening events
 Research to understand/address
barriers to diagnosis/services in
underserved communities with
focus on culturally adapted:
 Screening in primary care
 Early intervention
Early Access to Care
Outcomes to date:
• Over 10K individuals access MCHAT-R/month
• Three community screening
events
• Increase in inquiries by linguistic
minority communities
– Spanish M-CHAT-R
– Calls to autism response team
– Targeted community initiatives
(NYC Korea Community Autism
Project)
Data Resource Center (DRC) Goals
The DRC is a Child & Adolescent Health
Measurements Initiative (CAHMI) project that aims to:
1) Provide centralized, user-friendly, interactive access
to standardized national, regional and state-level findings
from national surveys on child and adolescent health and
well-being.
2) Build shared knowledge, capacity, and inspiration for
using data to stimulate and inform system change locally
and nationally—especially among state health agency
leaders and staff, family advocates and policy leaders.
Leveraging national data to
advance Early Access to Care
CAHMI & Autism Speaks are collaborating to:
• Develop an easy to use web-based data query of the
Survey of Pathways to Diagnosis & Services by April 2015
– “Point-and-click” interactive access to Pathways data
– Quick-glance “Learn about the Survey” resources
– Data and methods reports
• Develop an ASD web portal by April 2016
– Provide resources & information on ASD for families, policy
makers, advocates, and researchers
– Provide data briefs and a chartbook on ASD
among US children
The Survey of Pathways to
Diagnosis and Services, 2011
Goal: To help researchers & policymakers understand
the processes by which learning and developmental
conditions are diagnosed and treated
Design: Follow-up survey of the 2009 -2010 National
Survey of Children with Special Health Care Needs
Mode: Telephone survey followed by a mailed SelfAdministered Questionnaire
Eligibility: CSHCN aged 6-17 years identified as having ever
been diagnosed with ASD, ID and/or DD
Sample: 4,032 completed telephone interviews
Results from Pathways
Children Ages 6-17 Years Old Diagnosed
with ASD by Race/Ethnicity
10.1%
13.0%
Hispanic (N=118)
10.7%
NH-Black (N=89)
NH-White (N=1056)
NH-Other (N=145)
66.2%
Note: The Pathways survey was not administered in Spanish. Hispanic children with
ASD from homes where Spanish is the primary language may be under-represented.
Results from Pathways
Age of ASD Diagnosis by Race/Ethnicity
NH-Other
21.7
NH-White
63.5
28.9
NH-Black
64.8
29.7
Hispanic
66.9
25.4
0%
20%
< 1 Yrs Old
1 to <2 Yrs Old
2 to <3 Yrs Old
4 Yrs or Older
61.2
40%
60%
80%
100%
Results from Pathways
Had Early Intervention Services before age 3
by Race/Ethnicity
70.0
61.9
56.2
60.0
Percent
50.0
42.7
40.2
40.0
30.0
20.0
10.0
0.0
Hispanic
(N=118)
NH-Black
(N=89)
NH-White
(N=1053)
NH-Other
(N=142)
Early Access to Care
Connecting with the community:
• Facebook: EarlyAccessToCare
• Twitter: @AutismSpeaksEAC
• Instagram: @AutismSpeaksEAC
• Email: [email protected]
Collaborators
Child and Adolescent
Health Measurement
Initiative, JHSPH
Christina Bethell, PI
Rosa Avila
Narangerel Gombojav
Scott Stumbo
Elsa Sweek
Autism Speaks
Amy Daniels
Nicole Jones
Families
CDC Team
Cathy Rice
Brian Barger
Thank you!
www.autismspeaks.org