October 28,
2019 Julie Hocker, Commissioner, Administration on Disabilities
How many people are currently living in the United States with
Intellectual and Developmental Disabilities (IDD)?
What health problems do individuals with an IDD frequently have?
How many individuals with IDD have access to health care?
What health problems do individuals with an IDD frequently have?
How many individuals with IDD have access to health care?
The answers to questions like these are critical
to developing policies and services that effectively support the health and
well-being of individuals with IDD and their families.
In other words, improving health outcomes and
health equity require good policies. Good policies require good data.
Unfortunately, when it comes to understanding
the lives and health experiences of people with IDD, there is still a lot we do
not know. This is in part because individuals with IDD are often left out of
national health surveys.
To address this gap and ultimately achieve
greater health equity, ACL and our federal partners across the U.S. Department
of Health and Human Services worked with researchers, community partners,
individuals with intellectual and developmental disabilities, and other
stakeholders to develop two reports which were released earlier this month.
The first report, “Working Through the Data Conundrum: Identifying People
with Intellectual and Developmental Disabilities in National Population Surveys,”
recommends new questions that could be used on national population based
surveys, such as the National Health Interview Survey,
to identify individuals with IDD. This would allow us to collect information
about the health status and number of Americans with IDD. ACL is now working
with the National Center for Health Statistics at the Center for Disease
Control to test the recommended set of questions.
The second report, “Enriching our Knowledge: State and Local Data to Inform
Health Surveillance of the Population with Intellectual and Developmental
Disabilities,” explores how state-level data can be used to know
more about the health status of the IDD population. The report highlights the
following best practices from four states:
- California has been collecting data on race, ethnicity,
and language within the IDD population to work towards culturally
competent services.
- Washington has been collecting data on people with IDD
who are not receiving state services, a population missing from
administrative data sets.
- South Carolina’s “data cube” brings together
administrative data from a variety of sources to identify trends by age,
gender, race, disability type, and more.
- Ohio hired a “super user” to create data linkages that
allow the state’s IDD department to use Medicaid data to better understand
the populations they serve.
I hope these reports will shine a new light on
the importance of data in making sound policy decisions and spark much needed
conversations and action to achieve greater health equity for the population we
serve.
ACL staff also contributed to several articles
published in the October issue of the journal Intellectual and Developmental Disabilities, titled,
“On Counting What Matters: Finding Adults With Intellectual and
Developmental Disabilities in Population Health Data," Free abstracts from the issue are
available to the public.
All of us at ACL are
excited about this momentum. We look forward to building on it to move the
conversation forward and advance policies that achieve greater health equity.
No comments:
Post a Comment