AIDD Data Collection Projects of National Significance

The Administration for Intellectual and Developmental Disabilities (AIDD) funds several Projects of National Significance that collect data about people with disabilities, their families, and their communities.

New July 12, 2021: 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities

On July 12, 2021, three ACL grantees released 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities. 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 ID/DD in American society. The book was written collaboratively by the directors of three longitudinal studies funded by ACL’s Projects of National Significance program. 

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 ID/DD are still unable to access the supports they need to live – and fully participate -- in their community.

Learn more and download the free book.

Overview of AIDD’s Longitudinal Data Collection Projects

November 27, 2012

For more than 20 years, AIDD has funded longitudinal data collection projects under its Projects of National Significance:


In FY 2012, AIDD required grantees of these three projects to collaborate with each other and AIDD to identify specific variables that will give the public an overview of each state regarding community integration and employment for people with intellectual and developmental disabilities. The purpose of this collaboration is to provide a brief description of trends, services, and opportunities for people with intellectual and developmental disabilities in each state. The outcome will be a link on the grantees’ web sites that will provide users with each state’s synopsis.


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 individuals with developmental disabilities in the U.S. A brief overview of each project is provided in the following sections.

The State of the States in Developmental Disabilities

Administered by the University of Colorado, this study was established in 1982 to investigate the determinants of public spending for intellectual and developmental disabilities services in the United States. The State of the States maintains a longitudinal record of revenue, spending, and programmatic trends at state and national levels for fiscal years 1977–2009. 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 efforts in states, and demand for services and supports.

View Project Abstract

Access to Integrated Employment: National Data Collection on Day and Employment Services for Citizens with Intellectual and Developmental Disabilities

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.

View Project Abstract

The National Residential Information System Project (RISP)

RISP continues more than 20 years of analysis of annual state-by-state and national statistics on residential services for people with developmental disabilities, including state and non-state institutional settings and community and home-based residential services. The research is conducted through the University of Minnesota’s Research and Training Center on Residential Services and Community Living Institute on Community Integration.

View Project Abstract

National Data Measurement Project: National Core Indicators

September 30, 2011


AIDD recognizes the critical role that performance and outcome data play in the management, operation and funding of state developmental disabilities systems. AIDD is taking a step in building the capacity of state developmental disabilities agencies to gather vital information on service outcomes through the National Data Measurement Project and the adoption of the National Core Indicators (NCI) as the uniform dataset to use for this purpose. AIDD has awarded a 5-year contract totaling $1.5 million to the National Association of State Directors of Developmental Disabilities Services (NASDDDS). The decision to expand the availability of system performance data across all 50 states and the District of Columbia will not only strengthen the ability of states to administer key long term support programs for people with developmental disabilities, but will also facilitate collaboration between state developmental disabilities agencies and the AIDD-funded Developmental Disabilities Network on the identification of service delivery trends, policy planning and development of mutual strategies to improve the well-being of those receiving services across the country.

Currently, 43 states and 22 regions or counties use NCI data on individual and service outcomes to assess satisfaction and experience with services, benchmark system performance, and track key outcomes across multiple years, services, and states. The NCI framework comprises over 100 key outcome indicators that are designed to gather valid and reliable data across five broad domains: individual outcomes; family outcomes; health, welfare, and rights; staff stability; and system performance. The full list of core indicators may be accessed on the NCI website at


Mary Lee Fay
Acting Executive Director
National Association of State Directors of Developmental Disabilities Services
113 Oronoco Street
Alexandria, VA 22314-2015
703.683.4202 (office)
Participating States Information:

Project Duration: 
9/30/2011 – 9/29/2016

AIDD Project Officer
Katherine Cargill-Willis
Phone: 202-690-5791

Data Collection for Supporting Families

September 30, 2011


Collaborating with the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Service Research Institute (HSRI), the Association of University Centers on Disabilities (AUCD), the National Down Syndrome Society (NDSS), the National Youth Leadership Network (NYLN), Parent Information Centers, Parent to Parent USA, and other organizations providing family support, the Data Collection for Supporting Families Project will examine data the services and supports provided to families who have a family member living in the home. Guided by a family expert panel, the project will:

  • Access data on state supports and services that has been previously collected;
  • Develop key definitions related to supports and services;
  • Generate a standard set of key state indicators that can be used to benchmark progress;
  • Create a profile of such supports and services that can be updated and used to track trends;
  • Implement an annual data collection effort that produces reliable national and state-by-state data about family supports using strategies designed to ensure that the information reported by states is accurate and comparable across states;
  • Produce an interactive website with an online data dashboard that can be used to track, compare and contrast progress made on achieving outcomes at the national and state levels; and
  • Design a plan to develop an electronic, web-based data distribution system that will be easily accessible to families and people with intellectual or developmental disabilities.


Regents of the University of Minnesota
214B Pt H
150 Pillsbury Drive SE
Minneapolis, MN 55455-0223
Main Phone: 612-624-6300 


Sheryl A Larson
Phone: 612-624-6024
Fax: 612-625-6619

Award Amount

$200,000 per year

Project Period

9/30/11 – 9/29/16

Project Officer

Katherine Cargill-Willis
Phone: 202-690-5791

Grant #


U.S. Territories Report

Territory Report: Services for People with Intellectual and/or Developmental Disabilities in the U.S. Territories (PDF)

Last modified on 07/12/2021

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