HRSA MCHB-Funded Autism CARES Programs

Promote Equity and Increased Access to Care

Reaching Underserved Populations Addressing Systems Improvements to Including Family Members and Self-Advocates
Promote Access to Care Research Grantees
Research Grantees
The number of research studies that included underserved Research Grantees To incorporate the family perspective and address family-specific
populations as study participants increased by 15% between the 2014 Guidelines and other publications produced by research grantees challenges, 18 out of 62 research network intervention studies
and 2017 evaluation periods. provide families, caregivers, and providers with information and tools between 2014 and 2017 included families as consultants in
needed to standardize care, improve clinical practice, and increase planning, implementing, and evaluating the studies.
access to care.
Training Grantees
Training Grantees LEND and DBP programs increased representation among people with
Since 2009, the Leadership Guidelines Published Total Publications
disabilities and their families.
Education in 2008-2011 8 54
Neurodevelopmental and Number of Family Member/Self-Advocate LEND
2011-2014 6 209 Long-Term Trainees Per Year
Related Disabilities (LEND) and
Developmental Behavioral 2014-2017 13 204 80
Pediatrics (DBP) programs have 60
produced roughly 1,400 long- Training Grantees 40
term and 4,000 medium term LEND and DBP trainees provided interdisciplinary diagnostic services 20
trainees per year. Increasing the to confirm or rule out ASD/DDs, and completed leadership projects 0
number of trainees prepared that contributed to systems improvement at the local and regional 2008 2009 2010 2011 2012 2013 2014 2015 2016
with clinical expertise and levels.
leadership skills, especially those Number of Diagnostic Evaluations Completed by
State Grantees
140,000 • The number of families satisfied with their role
from underrepresented racial LEND and DBP Trainees as partners with providers in shared decision
120,000
and ethnic groups, leads to making.
100,000
improved access to services for • Family and youth involvement in ASD/DD

INCREASED
80,000
underserved populations. program planning, implementation, and
60,000
40,000
evaluation.
State Grantees 20,000
• The proportion of children and youth with
• Access to culturally competent medical homes ASD/DDs and their families who have increased
0
that coordinate care with pediatric knowledge, skill, ability, and self-efficacy in
subspecialties. family-centered care.
State Grantees
• The percentage of children with ASD/DDs
residing in medically underserved communities
within the State enrolled in services before 37
• Care coordination. DECREASED • Bottlenecks that contribute Looking Ahead: Future Opportunities
INCREASED

to delayed identification of
months of age. ASD/DDs. • Promote equity by reducing disparities and building a diverse
• Access to
developmental workforce of ASD/DD providers to ensure access to care for all
• Underserved communities’ capacity to provide individuals with ASD/DDs.
screening and
timely, interdisciplinary, team-based diagnostic
diagnostic services.
evaluations for ASD/DDs. • Develop sustainable coordinated systems of care for
individuals with ASD amid the ever-
changing healthcare landscape.
Program Type Number of Programs Funded in FY 2009 Number of Programs Funded in FY 2017
Training Programs 39 LEND grants and 6 DBP grants 52 LEND grants and 10 DBP grants • Increase the participation of family
Research Programs 2 Research Networks (AIR-P and AIR-B), 5 Autism 5 Research Networks (AIR-P, AIR-B, DBPNet, HCT- members and self-advocates across all
Intervention Research Program grantees, and 2 RN, and HW-RN) and 22 Autism-FIRST and Autism- initiatives.
Secondary Data studies SDAR studies
State Implementation Grant Programs 9 State Implementation Grants 4 State Innovation in Care Integration Grants