Dear NACDD network
We are pleased to announce that 2 papers written by different workgroups under ACL's leadership and NACDD's participation, have been posted to the ACL website.  A more formal announcement will be made by ACL regarding work to update the prevalence of IDD that follow statute.  We are also working with ACL to schedule webinars/briefings specifically for the NACDD Councils in the fall so that you can see the value of these papers in your work.  If you have any questions please don't hesitate to reach out.
Thanks so much
Robin

https://acl.gov/aging-and-disability-in-america/issue-briefings

September 30, 2019: Health Data and People with Intellectual and Developmental Disabilities (IDD)
In an effort to better understand the health status and prevalence of people with IDD in the U.S., a workgroup comprised of key agencies within the U.S. Department of Health and Human Services (HHS) and other experts in the field of IDD convened during the first half of 2018 to review the current landscape and future directions related to surveillance for people with IDD.
The first report describes the need for, availability of, and recommendations for changes in surveillance data about people with IDD, particularly adults. Priority criteria for identifying people with IDD relate to measurements of learning, independent living, and age of onset. Additional identifying criteria relate to measurements of communication, self-direction, and expected duration.
The second report describes state level administrative datasets and systems, data collection efforts and surveys that hold promise for describing the population with IDD. Many data systems do not capture the whole population of people with IDD; rather, they identify only that portion who receive specific services. In other population level datasets, people with IDD cannot be identified within the data. The report reviews promising approaches that identify people with IDD in state level data, and that allow state level data to be examined within and across state data systems, including examples of data linkages.
Working Through the Data Conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys (PDF)<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 (PDF)<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>
Easy Read Summary: Learning More about Health of People with Intellectual and Developmental Disabilities (PDF)<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>