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

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:

• Two recent workgroup reports and an Easy Read summary on national surveys and state administrative data:

  Working through the data conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys: https://aclprdep01.azureedge.net/cdn/ff/1iflcHhToo9FRTlfo47Yw-wct5dWX-Sf_RHQqY0XJhI/1569854188/public/Aging%20and%20Disability%20in%20America/National_Data_Paper_AIDD-ACL_09.25.2019%20508%20compliant.pdf

  Enriching our Knowledge: State and Local Data to Inform Health Surveillance of the Population with Intellectual and Developmental Disabilities: https://aclprdep01.azureedge.net/cdn/ff/OATVJImFLs5gbVqdM6iUN0xHELxw4o-ogEah3HlsULA/1569854246/public/Aging%20and%20Disability%20in%20America/Final_State_Data_Paper_09.25.2019%20word%20master%20508%20compliant.pdf

  Learning More About Health of People with Intellectual and Developmental Disabilities: An Easy Read Summary of Two Reports from the Administration on Intellectual and Developmental Disabilities of the Administration for Community Living: https://aclprdep01.azureedge.net/cdn/ff/iD18_yTvSrqXwljihVXNfKNANn5WjPXP9ySdpJZNQUM/1569854262/public/Aging%20and%20Disability%20in%20America/Easy_Read_Final_Version--How_to_improve_health_surveillance_of_people_with_IDD%209.25.2019%20508%20compliant.pdf

• A special issue of Intellectual and Developmental Disabilities on health surveillance of people with IDD

https://www.aaiddjournals.org/toc/mere/57/5

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.