I/DD Longitudinal Data Collection Projects

For almost 40 years, the three longitudinal data collection projects have collected information about the services provided to people with intellectual and developmental disabilities (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. Data from these studies are collected on a national level and are 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. These three projects are funded by AoD’s Projects of National Significance at ACL.

Purpose

Today, people with I/DD, and family members are using data to support their calls for change. To advocate effectively, data needs to be collected, published, and translated into useable language. At the beginning of these projects, the main medium for these data were long reports tailored to scholars and researchers. During the last 20 years, the grantees have worked to make the data more understandable and useable to the public. For example, each grantee has a report tool, where the user can customize a report for their needs. See the project descriptions below for links to their websites to view data and create reports.

Additionally, ACL has required grantees to collaborate to identify specific variables that will give the public an overview of each state regarding community integration and employment for people with I/DD. The purpose of this collaboration is to provide a brief description of trends, services, and opportunities for people with I/DD in each state.

Data Projects

The State of the States in Developmental Disabilities

The State of the States in Developmental Disabilities Project, a longitudinal data project established in 1982 and funded under the Projects of National Significance at ACL is administered by the University of Kansas. This project investigates revenue, public spending, and programmatic trends in intellectual and developmental disability services in all 50 states, DC, and the nation as a whole.

The State of the States project has maintained a longitudinal record of revenue, spending, and programmatic trends at state and national levels dating back to 1977. The project identifies quantitative data about the state of supports and services in the United States, including data on community services and supports, public and private institutions, fiscal expenditures in states, and demand for services and supports.

During its 40-year history, the State of the States has produced more than 300 publications and 11 books. It has produced analyses of the impact of the Great Recession, emerging technology, and community services for people with intellectual and developmental disabilities. In 2021, the White House cited a report from the project when observing the anniversary of the Americans with Disabilities Act.

Visit the project webpage at the University of Kansas Center on Developmental Disabilities to learn more.

StateData: The National Report on Employment Services and Outcomes Questions

This study has been in place since 1988, extending research describing day and employment services for individuals with developmental disabilities and contributing to an understanding of the factors that influence employment at the individual, service provider, and state levels. Conducted by the Institute for Community Inclusion at the University of Massachusetts Boston, the project assesses the employment and economic status of individuals with disabilities as well as the effectiveness of state intellectual and developmental disabilities agencies and vocational rehabilitation agencies in promoting the full inclusion of individuals with developmental disabilities through employment and other community activities.

StateData.info allows users to find, sort, and analyze data related to employment for people with intellectual and developmental disabilities (IDD). This project promotes Employment First and systems change efforts nationwide by supporting outcome-based management and planning. Users can select the type of analysis they want to conduct through chart generation tools, and can browse publications that analyze critical issues related to employment of people with disabilities.

Visit the StateData website to learn more.

The National Residential Information System Project (RISP)

Since 1977, the National Residential Information Systems Project (RISP) has gathered, maintained, and analyzed longitudinal data on Medicaid funded residential and in-home supports for people with intellectual and developmental disabilities. The research is conducted through the University of Minnesota’s Research and Training Center on Residential Services and Community Living Institute on Community Integration.

More specifically, the project:

  • Gathers and maintains annual statistics and longitudinal trend data on Medicaid and state funded residential and in-home supports; Conducts an annual survey of public residential facilities describing status of the facility and the characteristics people living in those settings;

  • Publishes annual reports on the status and trends in residential and community living supports;

  • Maintains an interactive Chart Gallery where users can create customized reports focusing on specific setting or funding types, states, or years;

  • Conducts literature reviews, case studies, state level policy studies, and secondary analyses of existing data sets to answer key policy and program questions about in residential and community supports; and

  • Provides ongoing assistance to individuals, government agencies, public and private organizations, media outlets and others on residential and community supports for people with intellectual and developmental disabilities.

Visit the RISP website to learn more.

Collaborative Publications

  • 10 Key Questions from the Longitudinal Data Projects (coming soon)
  • On July 12, 2021, three ACL Longitudinal Data Projects released 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017). Featuring infographics, photos, and accessible language, as well as personal perspectives on community living and inclusion shared by people with intellectual and/or developmental disabilities (ID/DD) who served as advisors to the project, the free digital book explores the evolution of integration and inclusion of people I/DD in American society. A summary of data collected between 1987 and 2017, the book illustrates the progress made since the Americans with Disabilities Act was passed 31 years ago and the work yet to be done to achieve its promise. It starkly illustrates that although opportunities for community living have significantly expanded, far too many people with I/DD are still unable to access the supports they need to live – and fully participate -- in their community.

 


Last modified on 01/19/2023


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