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Please note only webinars are recorded; the archive is generally available on the website the following day.

Beginning February 2021, the webinar archive will exclusively be a member benefit. 

Virtual professional development sessions such as Mentorship in a Minute and Crucial Conversations, are not recorded and participation is limited to AAIDD members.

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Developing the Road Map to Improve Data on the Health of People with IDD

Contact Name:   Lindsey Polansky

Contact E Mail:

Date: January 21, 2020
Time: 4:00 p.m. - 5:00 p.m. EST

Developing the Road Map to Improve Data on the Health of People with Intellectual and Developmental Disabilities

Content Overview:

Q: How many people have intellectual or developmental disabilities?”

A:  “We don’t really know.  Data from 25 years ago suggests…”

Q: “What are the main health problems that people with IDD are experiencing?   

A:  “We have some guesses…”

Q:“What should our agency be projecting for fiscal budgets for people with IDD given changing demographics?

A:  “It’s hard to say…”

While data on health of people with disabilities generally have improved substantially, data on people with intellectual and developmental disabilities is still inadequate to identify disparities or assess progress towards health equity. Ongoing challenges in identifying the population with IDD in national datasets means that available data does not adequately describe the prevalence and health needs of people with IDD. 

In 2002, the Surgeon General’s report first brought visibility to this problem. One of its six goals was a call for improved health data for people with intellectual and developmental disabilities. In 2009, the challenge of improving health data was taken on through collaboration across agencies of the US Department of Health and Human Services, which included developing a roadmap, or plan for improving national health data.  Progress has been made and the steps on the plan are nearing completion.

Efforts are now underway to develop the next roadmap for 2019-2029. To that end, documents that inform this planning include:

This webinar will provide an update on the status of improved data on health of people with IDD, and solicit participant input in shaping the next roadmap. We recommend participants take a look at these background documents in advance of the webinar.

This webinar is being hosted by AAIDD's Research Interest Network. 






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