ACL Awards Three Longitudinal Data Collection Projects

ACL has awarded three grants that further its mission to support people with disabilities to live in their communities. The grants continue and enhance the collection and analysis of national longitudinal trends pertaining to people with intellectual and developmental disabilities (I/DD) around the issues of state spending for I/DD services, residential services, and employment services. 



For almost 40 years, these three longitudinal data collection projects have collected information about the services provided to people with I/DD in three specific areas: (1) revenue, public spending, and programmatic trends; (2) residential and in-home supports; and (3) day and employment services. Originally, data from these studies were collected on a national level and used to identify areas of specific need, helping lawmakers and other stakeholders make the most educated policy and care decisions for people living with I/DD in the United States. As people with I/DD and their families became more involved in advocating for greater opportunities in the community, the projects translated their data into useable products, such as customized charts and infographics. These three projects are funded by ACL’s Projects of National Significance.



State of the States in Developmental Disabilities: On-going Data Collection and Information Dissemination grant awarded to the University of Kansas. The grant totals $450,000 per year for a period of five years, which started on September 1, 2023. The purpose of this project is to maintain, extend, and disseminate the 46-year longitudinal record of revenue, spending, and programmatic trends of publicly funded I/DD services across the nation and disseminate accessible information to increase knowledge and data-driven advocacy for improved I/DD services and supports. Expected products include quarterly webinars, comprehensive project reports, customized data briefs, special study reports, interactive data visualizations, and more.



The National Residential Information Systems Project (RISP): On-going Data Collection and Information Dissemination awarded to the University of Minnesota. The grant totals $450,000 per year for a period of five years, which started on September 1, 2023. The purpose of this project is to collect, analyze, and disseminate longitudinal data to describe the status of and trends in publicly funded residential and in-home supports and services for people with I/DD. Expected products include a website, technical reports, infographics, state profiles, interactive charts, plain language briefs, and more.



Access to Integrated Employment: National Data Collection on Day and Employment Services for Citizens with Developmental Disabilities awarded to the University of Massachusetts. The grant totals $450,000 per year for a period of five years, which started on September 1, 2023. The purpose of this project is to continue collecting and maintaining 35 years of research that describes employment and day services for people with I/DD. Expected products include a joint national report, annual StateData Report, data notes, website, infographics, briefs, videos, and more.



For additional information, visit ACL’s I/DD Longitudinal Data Collection Projects webpage or email katherine.cargill-willis@acl.hhs.gov.