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| National Core Indicators | |
|---|---|
| Name | National Core Indicators |
| Type | Consortium; Data Initiative |
| Founded | 1997 |
| Founders | National Association of State Directors of Developmental Disabilities Services; Human Services Research Institute |
| Headquarters | Alexandria, Virginia |
| Area served | United States |
| Purpose | Quality measurement; performance management; state-level benchmarking |
National Core Indicators
National Core Indicators provide standardized performance measures used by state developmental disabilities agencies and partnering state government institutions to assess the quality of long-term supports and services. The initiative produces cross-state comparative datasets, survey instruments, and annual reports that inform policy decisions made by agencies, advocacy groups, and research centers. Its measures influence planning at agencies such as the Centers for Medicare & Medicaid Services, state developmental disabilities offices, and independent research organizations.
National Core Indicators is a collaborative project originally created to develop a uniform measurement system for publicly funded supports provided to adults with intellectual and developmental disabilities (I/DD). The initiative produces standardized tools including the Adult Consumer Survey and the Family/Guardian Survey that allow comparison across jurisdictions such as California, New York, Texas, Florida, and Ohio. Partners include nonprofit research organizations like the Human Services Research Institute, membership associations including the National Association of State Directors of Developmental Disabilities Services, and state-level agencies such as the Massachusetts Department of Developmental Services.
The project began in 1997 as a joint effort to respond to calls for accountability emerging from high-profile investigations and policy reforms in the 1990s, including responses to findings in institutions and community integration debates that involved actors like the Institute on Community Integration and the Office of Special Education Programs. Early collaborators included state directors and researchers from organizations such as the Association of University Centers on Disabilities and the University of Minnesota. Over time, the initiative expanded its governance to include advisory committees composed of representatives from advocacy groups like The Arc of the United States, federal partners such as the Administration for Community Living, and academic partners from institutions including University of Minnesota and Brandeis University.
The methodology combines stratified sampling, standardized interview protocols, and psychometrically developed measures to maximize validity and reliability across diverse jurisdictions like Pennsylvania and Washington (state). Instrument design drew on prior measurement work by research centers such as the Human Services Research Institute and psychometrics literature associated with scholars from University of Minnesota and Rutgers University. Data governance involves state data stewards, an analytic core, and technical assistance providers from organizations such as NASDDDS and state quality improvement networks. Quality assurance procedures reference federal guidance from the Centers for Medicare & Medicaid Services for survey administration and data handling.
Data collection employs in-person and telephone interviews, record reviews, and sampling frames derived from Medicaid enrollment lists and provider rosters maintained by state agencies including the California Department of Developmental Services and the Ohio Department of Developmental Disabilities. Core measures span domains such as health and safety, community inclusion, choice, satisfaction, and employment—areas prioritized in policy initiatives like the Olmstead v. L.C. decision and legislative programs administered by Medicaid. Specific measures track outcomes such as paid employment, community participation, medication oversight, and incidents requiring emergency services, with items aligned to standards used by organizations like the National Core Indicators–Aging and Disabilities (NCI‐AD) project. Annual technical appendices describe weighting, imputation, and indicator construction following best practices from the American Association for Public Opinion Research.
Participation has grown to include most U.S. states and territories, with membership from agencies in jurisdictions such as Georgia, Illinois, Michigan, Arizona, and New Jersey. Partnering organizations include advocacy groups like Self Advocates Becoming Empowered, research institutions such as the University of Minnesota Research and Training Center on Community Living, and federal partners including the Administration for Community Living. Collaborative governance involves steering committees drawing representatives from the National Association of State Directors of Developmental Disabilities Services, state quality assurance units, and technical assistance providers like the Human Services Research Institute.
Policymakers use the indicators for benchmarking, resource allocation, and performance improvement initiatives at agencies similar to the New York State Office for People With Developmental Disabilities and the Texas Health and Human Services Commission. Researchers employ the datasets to analyze employment trends, community integration, and health outcomes, frequently publishing findings in journals affiliated with organizations such as the Association for Public Policy Analysis and Management and presenting at conferences like the American Association on Intellectual and Developmental Disabilities annual meeting. Advocacy organizations use indicator results to support litigation, legislative testimony, and reform campaigns, citing comparative data alongside reports from groups such as The Arc of the United States.
Critiques focus on sampling limitations, response bias, and the difficulty of capturing nuanced quality-of-life outcomes across heterogeneous populations served by providers ranging from small community organizations to large state institutions. Methodological concerns raised by academics at institutions like Rutgers University and Syracuse University emphasize potential measurement error, limited longitudinal tracking, and the challenge of linking survey indicators to administrative outcomes held by entities such as Medicaid. Stakeholders also note variability in implementation fidelity among states, and advocacy groups underscore limitations in representing the perspectives of people with complex communication needs, a concern addressed by specialized initiatives like augmentative and alternative communication projects at centers such as the University of Washington.
Category:Disability policy