Data Sources to Inform State Needs Assessments


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AUCD members identified data sources used for statewide needs assessment. A variety of primary sources and reference materials were identified and are noted here. Network members are encouraged to submit additional recommendations to be included on this page.

* indicates the dataset includes data for states and Territories. Not all datasets include territorial data. Those datasets that do include territorial data may not include all territories.

2010 Report on the Analysis of the DD Council and UCEDD Plans to Identify Data Sources

This report provided a review of the types of sources used to inform the contents the Needs and Objectives section of the University Centers of Excellence in Developmental Disabilities (UCEDD) Five Year Plan and the Comprehensive Review and Analysis Section of the State Councils on Developmental Disabilities (DD Council) State Plans.

Network members can submit suggested content to [email protected] for inclusion on this page.


Administration on Aging: AGing Integrated Database (AGID)

The AGing Integrated Database (AGID) is an on-line query system based on ACL-related data files and surveys, and includes population characteristics from the Census Bureau for comparison purposes. The four options or paths through AGID provide different levels of focus and aggregation of the data - from individual data elements within Data-at-a-Glance to full database access within Data File

American Community Survey (ACS) *

Census tool that samples a small percentage of the population every year -- giving communities the information they need to plan investments and services


Child Trends:  Children with Disabilities: State-Level Data from the American Community Survey

Children with physical or mental disabilities are a very diverse group, and many face challenges. This research brief pres-ents data for the U.S. and all states on the number and percentage of children (ages birth through 17) who were identi-fied as having at least one disability by the responsible adult in the household responding to the American Community Survey.


Annual Disability Statistics Compendium

The Annual Disability Statistics Compendium, Annual Disability Statistics Supplement, and State Reports for County-level Data are web-based tools that pool disability statistics published by various federal agencies together in one place. When working on legislative and other matters relating to persons with disabilities, the Compendium, Supplement, and State Reports make finding and using disability statistics easier. The Annual Disability Statistics Supplement provides hundreds of additional tables breaking down the content found in the Compendium by age, gender, and race-ethnicity. The State Reports for County-level Data provide county-level statistics for each state complimenting the content found in the Compendium and Supplement.



The signature report of the Federal Interagency Forum on Child and Family Statistics, America's Children: Key National Indicators of Well-Being features statistics on children and families in the United States across a range of domains, including family and social environment, economic circumstances, health care, physical environment and safety, behavior, education and health.


City Health Dashboard

This resource features 37 measures of health, the factors that shape health and drivers of health equity for the 500 largest U.S. cities. This data helps local leaders develop a clearer picture of the challenges facing their communities and how to address them.


Data Resource Center for Child & Adolescent Health (DRC)

Results of the National Survey of Children's Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) and


Disability and Health Data System (DHDS)

This interactive and customizable data tool provides quick and easy access to state and national level data on demographics and health information for adults with disabilities. Approximately 30 health topics are covered. 2016 BRFSS data were analyzed and added to DHDS. DHDS also includes estimates for six select functional types of disability (cognitive, hearing, mobility, vision, self-care, and independent living disabilities).


Disability Statistics Center

Policy-relevant statistical information on the demographics and status of people with disabilities in American society.


Family and Individual Information Systems Project

Emerging national data on services and supports to individuals with IDD and their families


Early Childhood Longitudinal Program

Longitudinal studies that examine child development, school readiness, and early school experiences


Early Childhood Technical Assistance Data (ECTA Center)*

Links to national and state-by-state data, policies and initiatives related to early childhood care and education


Health Professions Shortage Areas *

Areas designated by HRSA as having shortages of primary medical care, dental or mental health providers and may be geographic (a county or service area), demographic (low income population) or institutional (comprehensive health center, federally qualified health center or other public facility).


Home and Community-Based Services (HCBS) Instrument Database

The NIDILRR-funded Rehabilitation Research and Training Center on Home and Community-Based Services (HCBS) Outcomes Measurement (RTC-OM) hosts the HCBS Outcome Measurement Database. The database includes information on more than 120 commonly-used instruments, assisting policymakers, providers, and researchers in selecting the most appropriate instrument for answering questions about the outcomes experienced by recipients of HCBS and the quality of the services they receive. Users can browse the instruments by National Quality Forum (NQF) domains and subdomains, filter by instrument criteria, and browse an interactive crosswalk of instruments coded by domains and subdomains of the NQF framework.


IDEA Data Center (IDC)*

Data to comply with IDEA, providing a general state data perspective and


KIDS COUNT Data Center *

Annie E. Casey Foundation's premier source for data on child and family well-being in the US


Medicaid Expenditures for Long Term Services and Supports Annual Report

Medicaid expenditures for all LTSS, including institutional and non-institutional settings, by service category and state. The data comes primarily from CMS-64 reports.


National Center for Special Education Research

Publications and data products from the Institute of Education Sciences' research programs


National Core Indicators (NCI) *

Information about outcomes of services and supports for people with IDD who receive ICF and HCBS services. overall program website chart generator that allows state by state comparisons.


National Center for Health Statistics

Links to numerous health surveys and data collection systems, and data access


National Longitudinal Transition Study 2 (NLTS2)

Documenting the experiences of a national sample of students who were 13 to 16 years of age in 2000 as they moved from secondary school into adult roles


NIH Data Book *

Basic summary statistics on extramural grants and contract awards, grant applications, the organizations that NIH supports, the trainees and fellows supported through NIH programs, and the national biomedical workforce


NIH: US National Library of Medicine, Health Services Research & Public Health Information Programs*

Links to numerous resources and datasets related to public health and health services


Online Statistical Data on the Aging*

Links to online statistical information on the demographic characteristics, health, social conditions, and economic condition of older persons


Open Government

The federal government's open data site aims to make government more open and accountable. Numerous states, cities, and counties have launched open data sites. By collaborating with these non-federal data sources, is able to include this data in the catalog. Searches on the catalog will return relevant datasets from both federal and non-federal sources.


Poverty guidelines*

Updated annually, and referenced in the guidance for your core UCEDD grant application


Residential Information Systems Project

National annual state data on residential services for people with IDD (state by state comparison and all issues of report) (data visualization site)


RSA Data*

Customized queries available for numerous RSA datasets


State and Local Area Integrated Telephone Survey (SLAITS)*

Important health care data at State and local levels, supplementing current national data collection strategies


State of America's Children

Compilation and analysis of the most recent and reliable national and state-by-state data on population, poverty, family structure, family income, health, nutrition, early childhood development, education, child welfare, juvenile justice, and gun violence


State of the States in DD

A comparative nationwide longitudinal study of public financial commitments and programmatic trends in developmental disabilities services and supports


StateData Info

National annual state data on employment of people with IDD


US Census *

Numerous products and tools to access US Census data. International database includes territorial data.  and


US Census Bureau: Disability*

Data on disability primarily through the American Community Survey (ACS) and the Survey of Income and Program Participation (SIPP)


US Education Dashboard

Presents indicators in 4 areas that are critical to improving educational results and achieving the President's 2020 college attainment goal


US Office of Adolescent Health

National and State Adolescent Health Data


Voc Rehab Core Data*

Key data and download tables on basic Vocational Rehabilitation (VR) programs for each state agency


What Works Clearinghouse

IES reviews of research on education programs, products, practices and policies



  • Infants and Toddlers and other state early childhood data on diagnosis, demographics, and referrals
  • State Department of Aging data on disability and aging
  • State Department of Education - annual performance profile
  • State Department of Labor and Workforce Development for data and reports on your state's population, workforce, and its economy
  • US Department of Justice datasets: