Collecting data is central to understanding the communities we serve and measuring the impact and effectiveness of our programs. ACL’s performance strategy presents a high-level approach to the planning, conduct, and implementation of performance management. This strategy, in conjunction with pre-release reviews of ACL funding opportunity announcements (FOAs), represents ACL’s commitment to providing rigorous, relevant, and transparent performance data highlighting all the programs and initiatives ACL supports. It also reflects ACL’s continuous effort to build and enhance its repository of data and evidence including high quality performance data in support of our mission and vision.
Data Collection Projects
Many programs have reporting systems to measure program performance data. These include:
The National Ombudsman Reporting System (NORS) collects data from the Long-Term Care Ombudsman Program.
The National Adult Maltreatment Reporting System (NAMRS) collects data from state Adult Protective Services systems.
AGing, Independence, and Disability (AGID) Program Data Portal includes data from Older Americans Act-funded programs.
I/DD Counts is a cross-agency initiative focused on increasing the collective understanding about factors that affect the health and well-being of people with I/DD, which will in turn support development of effective policies and programs to support them and their families.
Road Map – Milestones for Advancing Knowledge on the Prevalence and Health Status of Individuals with Intellectual and Developmental Disabilities
The Administration for Intellectual and Developmental Disabilities (AIDD) also funds several Projects of National Significance that collect data about people with disabilities, their families, and their communities.
- ACL Data Restructuring Project
In 2017, the Administration for Community Living (ACL) began the ACL Data Restructuring (DR) Project to assess the data hosted on the AGing, Independence, and Disability (AGID) Program Data Portal, and to develop and test a potential restructuring of the data in order to make it useful and usable for stakeholders. ACL is committed to an approach to maximize the use of our data and has invested in the preliminary steps to unify and link our data. We look forward to continuing our work in this area.
From 2019 through 2021 ACL continued its work to review existing ACL and Census datasets; identify practical, efficient, and statistically sound approaches for linking those datasets; create an operational approach that will allow for linking additional datasets in the future; and develop the foundational requirements for the next iteration of the AGID system (AGID 2.0). The results of that work can be found here:
- ACL Data Restructuring 2 Final Report
- ACL Data Restructuring 2 Variable Level Documentation
- Appendix A – SPR Dataset Documentation
- Appendix B – Title VI Dataset Documentation
- Appendix C – NORS Dataset Documentation
- Appendix D – ILS Dataset Documentation
- Appendix E – CIL Dataset Documentation
- Appendix F – AGID 2.0 Business Requirements
- The Use of Data in Achieving Health Equity for Individuals with Intellectual and Developmental Disabilities: Developing the 2020-2030 Roadmap for Improving Data on Individuals with Intellectual and Developmental Disabilities
On November 15, 2019, ACL convened a meeting to develop a plan for improving data on individuals with intellectual and developmental disabilities. This report details the meeting: "The Use of Data in Achieving Health Equity for Individuals with Intellectual and Developmental Disabilities: Developing the 2020-2030 Roadmap for Improving Data on Individuals with Intellectual and Developmental Disabilities."
- 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 fiscal year 2012, AIDD required the grantees of these three projects to collaborate with each other and work with 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 United States.
A brief overview of each project is provided in the following sections.
- 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.
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.
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.
- 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 viewed and downloaded on the NCI website at www.nationalcoreindicators.org.
Mary Lee Fay
Acting Executive Director
National Association of State Directors of Developmental Disabilities Services
113 Oronoco Street
Alexandria, VA 22314-2015
Participating States Information: http://www.nationalcoreindicators.org/aidd
9/30/2011 – 9/29/2016
AIDD Project Officer
- Data Collection for Supporting Families
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 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
$200,000 per year
9/30/11 – 9/29/16
- U.S. Territories Report
- Independent Living Services (ILS) and Centers for Independent Living (CIL) Annual Performance Data
The Independent Living Services (ILS) program provides financial assistance, through formula grants, to states and territories for providing, expanding, and improving the provision of independent living services. To be eligible to receive financial assistance, states must:
(1) develop, submit and receive approval on a State Plan for Independent Living (SPIL), and
(2) establish and maintain a Statewide Independent Living Council (SILC).
The SILC and the Centers for Independent Living (CILs) within the state develop a State Plan for Independent Living (SPIL), a document required by law that indicates how the state IL Network is going to execute and improve independent living services over the next three years.
Funds are also made available for the provisions of training and technical assistance to SILCs.
The ILS program funding provides resources to the state to support the work of the SILC and the Designated State Entity (DSE), the state entity responsible to receive, account for, and disburse the ILS funds. The remainder of funds may be used for the following activities as reflected in an approved SPIL:1. Providing independent living (IL) services to individuals with significant disabilities, particularly those in unserved areas of the state;
2. Demonstrating ways to expand and improve IL services;
3. Supporting the operation of CILs;
4. Increasing the capacity of public or nonprofit organizations and other entities to develop comprehensive approaches or systems for providing IL services;
5. Conducting studies and analyses, developing model policies and procedures, and presenting information, approaches, strategies, findings, conclusions, and recommendations to federal, state, and local policymakers;
6. Training individuals with disabilities and individuals providing services to individuals with disabilities and other persons regarding the IL philosophy; and
7. Providing outreach to populations that are unserved or underserved by programs under this title, including minority groups and urban and rural populations.
The Independent Living Formula Grant Program is authorized Under Title VII, Chapter I, Part B of the Rehabilitation Act, as Amended by the Workforce Innovation and Opportunity Act (WIOA) of 2014.
DSEs and SILCs, using the annual Program Performance Report (PPR) form, jointly submit these data to the ACL Independent Living Administration. Performance data are available on the AGID website.
Centers for Independent Living (CILs) for all U.S. states and territories.
The Centers for Independent Living (CILs) Program provides 354 discretionary grants to CILs, which are consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agencies that provide IL services. At a minimum, centers funded by the program are required to provide the following IL core services:- Information and referral;
- IL skills training;
- Peer counseling;
- Individual and systems advocacy; and
- Services that facilitate transition from nursing homes and other institutions to the community, provide assistance to those at risk of entering institutions, and facilitate transition of youth to postsecondary life.
Centers also may provide, among other services: psychological counseling, assistance in securing housing or shelter, personal assistance services, transportation referral and assistance, physical therapy, mobility training, rehabilitation technology, recreation, and other services necessary to improve the ability of individuals with significant disabilities to function independently in the family or community and/or to continue in employment.
To continue receiving CIL program funding, eligible centers must demonstrate minimum compliance with the following standards:
- Promotion of the IL philosophy;
- Provision of IL services on a cross-disability basis;
- Support for the development and achievement of IL goals chosen by the consumer;
- Efforts to increase the availability of quality community options for IL;
- Provision of IL core services and, as appropriate, a combination of any other IL service;
- Building community capacity to meet the needs of individuals with significant disabilities; and
- Resource development activities to secure other funding sources.
A population-based formula determines the total funding available for discretionary grants to centers in each state. Subject to the availability of appropriations, ACL is required to provide continuation funding to existing centers at the same level of funding they received the prior fiscal year and to provide them with a cost-of-living increase. Funding for new centers in a state is awarded on a competitive basis, based on the state’s State Plan for Independent Living and the availability of sufficient additional funds within the state.
The Independent Living Discretionary Grant Program is authorized Under Title VII, Chapter I, Subchapter C of the Rehabilitation Act, as Amended by the workforce innovation and opportunity act (WIOA) of 2014.
Resources and Useful Links: ILRU website
CILs, using the annual Program Performance Report (PPR) form, submit these data to the ACL Independent Living Administration. Performance data are available on the AGID website.
- ACL Data Council
ACL convenes a Data Council to continuously improve data-related processes and standards. The Data Governance working group produced an annotated bibliography to provide essential background information about the topic, and also developed a Primer to detail best practices in data governance specifically as they apply to ACL. The Data Quality working group produced a needs assessment to establish a baseline and identify areas where ACL program staff may require additional support. It also developed a Data Quality 101 infographic to guide decision-making processes related to data quality, Data Quality 201 which provides examples of misleading data graphs and charts and provides guidance on how to identify and avoid common errors when presenting data, and Data Quality 202 which addresses ways to identify and address data quality issues related to inaccuracies, inconsistencies, missing data, and outliers. As ACL continues to increase its evidence-building capacity, Measuring Systems Change: A Quick Guide is provided as a resource for ACL staff who oversee such programs. It provides a brief introduction to systems and systems change. More detail is provided in Measuring Systems Change: A Brief Guide. The ACL Data Council also produced a document summarizing ACL’s Data Collection Process, which illustrates the processes needed to roll out a new ACL data collection.