The National Autism Data Center at Drexel University:

Population-level data to inform policy

Jessica Rast, MPH, Paul Shattuck, Ph.D.

What’s the big idea? Increase equity Achieve population-level outcomes

A special population doesn’t count until someone counts them. Much of our work is based on group comparisons. How are youth with Moving the needle on population-level outcomes
autism doing compared to youth with other disabilities or with no
We operate the National Autism Data Center under the belief that
disability? How do health and quality of life indicators for youth from
National Autism Data Center improvement in population-level outcomes is less likely to happen if we
low-income households compare to those for youth from more affluent
do not have baseline measures speaking to the need for change. We
households? Our work also examines the variability in service access
cannot improve what we cannot measure. Improving systems of care
and related outcomes across categories of race and ethnicity as well as
We seek requires that we are first able to measure them in ways that lead to
THE source for useful, trustworthy statistics geography. Asking these questions allows us to identify disparities that
to be 1) actionable insights to inform policy; and 2) an ability to detect
need to be addressed in research, policy, and service provision.
measurable changes over time.

Stakeholder Making great Savvy This approach also highlights the need for more population-level data
We do
engagement info products marketing on the experiences of persons with autism. There are many populations
this by
and topics that have no national data available. If we cannot measure,
we are less likely to convince policy, program, and administrative actors
Problems are framed, Policies & programs are that change is needed. So are we “moving the needle” on important
So that awareness is raised grounded in data outcomes at a national level? We are trying to build the gauges to be
able to answer this question going forward.

Support systems-, policy-, and program-level efforts Few adults with ASD had a paid job in
In order to generate measurable improvements in key the community.
to population-level indicators across the life course 14% had a paid job in the
community in the two
weeks prior to the
ACS.

What is an indicator?
Indicators are measures of social conditions. They can be individual-
level (e.g., employment) or population-level (e.g., aggregate spending Improve systems performance Source: NCI Adult Consumer Survey 2014-15

on health services) factors.

Our publications highlight the need for systems to perform better to How we disseminate our findings
Most teens with ASD were male, white, and in households above 185% of the
federal poverty level.
improve service access and related outcomes. For example, we highlight • Reports
NSCH 2016 NLTS-2012 the services gap that students with autism often experience after high • Scientific manuscripts
81% Male 83% school. How could systems change to reduce this transition cliff? • Conference presentations and posters
74% White 80%
17%
• Presentations to policy makers or advocacy groups
Black 10%
9% Other race(s) 10% We highlight data needs that speak to system synergy. The data we have
11% Hispanic 15% amassed highlights areas in need of further focus, including collecting
45% <185% FPL 40% data about systems and how they operate together.
55% >185% FPL 60%
Source: National Survey of Children's Health 2016 Source: National Longitudinal Transition Study-2012

The percentage of families who reported

some or great effort to access services
Most spending for DD services in 2013 was funded through increased following high school.
federal and state Medicaid dollars; largely HCBS waivers.
100%
78% of spending on
66% Most Medicaid
services for people
with I/DD came from 27% HCBS
funding is
through HCBS
71%
ICF/ID Waiver
federal and state waivers. About

51%
one-fourth is
Medicaid funds.
through ICF/ID
funds.

0%
Adapted from Source: Broddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2015. At Age 17 Since High
School
Source: National Longitudinal Transition Study-2, Wave 5, 2009.

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UJ2MC31073: Autism Transitions Research Project. This
information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.