Where our data comes from

RISP: Residential Information Systems Project

Institute on Community Integration, University of Minnesota

Where people with IDD live, waiver and ICF/IID use, waiting for services, state institutions, spending per person.

Edition used: State profiles FY2023; FY2021 technical report (published 19 Feb 2026)

• risp.umn.edu
• ici-s.umn.edu/files/aaQxdJjAit/risp_2021_final_acc

State of the States in Intellectual and Developmental Disabilities

University of Kansas (formerly University of Colorado)

Family support, total and Medicaid IDD spending, HCBS and ICF/IID spending, fiscal effort, spending on community settings.

Edition used: 2025 state profiles, FY2023 data

• stateofthestates.ku.edu/state-profiles

Medicaid Long-Term Services and Supports Users and Expenditures

CMS and Mathematica

Share of IDD long-term care spending on home and community services; users and spending by population.

Edition used: Calendar year 2023 (released 17 Oct 2025) and 2022 data tables

• medicaid.gov/medicaid/long-term-services-supports/reports-evaluations/index.html
• medicaid.gov/medicaid/long-term-services-supports/downloads/ltss-data-notes-taf-users-expenditures-2023.zip
• medicaid.gov/medicaid/long-term-services-supports/downloads/ltss-expenditures-user-data-2022.zip

Medicaid HCBS waiting list survey

KFF

People waiting for Medicaid home and community-based services by population, eligibility screening, national average wait.

Edition used: FY2025 survey, with trend years 2016 to 2024

• kff.org/medicaid/state-indicator/number-of-people-waiting-for-hcbs-by-target-population-and-whether-states-screen-for-eligibility
• kff.org/medicaid/a-look-at-waiting-lists-for-medicaid-home-and-community-based-services-from-2016-to-2025

StateData: National Survey of State IDD Agencies, RSA-911 and ACS employment

ThinkWork, Institute for Community Inclusion, UMass Boston

Integrated employment, facility-based work, vocational rehabilitation outcomes for people with intellectual disability, employment rates.

Edition used: IDD agency FY2023; VR program year 2025; ACS 2024

• thinkwork.org/statedata
• thinkwork.org/statedata/chart-builder
• thinkwork.org/sites/default/files/2026-03/bluebook_2025_web_F.pdf

National Core Indicators IDD In-Person Survey

NCI (NASDDDS and HSRI)

Friends, loneliness, choice, community participation, safety, health exams, paid jobs, self-direction.

Edition used: 2024-25 cycle (published May 2026)

• idd.nationalcoreindicators.org/survey-reports-insights
• idd.nationalcoreindicators.org/in-person-individual

National Core Indicators State of the Workforce Survey

NCI (NASDDDS and HSRI)

Direct support professional turnover, vacancies, wages, tenure, benefits, providers turning away referrals.

Edition used: 2024 survey (published Dec 2025)

• idd.nationalcoreindicators.org/staff-providers
• idd.nationalcoreindicators.org/wp-content/uploads/2025/12/2024-NCI-IDD-SoTW_Final-Tagged.pdf

Occupational Employment and Wage Statistics

U.S. Bureau of Labor Statistics

Pay for home health and personal care aides (SOC 31-1120) and all occupations, by state and nationally.

Edition used: May 2025

• bls.gov/oes
• bls.gov/oes/special-requests/oesm25st.zip
• bls.gov/oes/special-requests/oesm25nat.zip

State minimum wage laws

U.S. Department of Labor, Wage and Hour Division

State and effective minimum wage.

Edition used: Page dated 1 Jul 2026

• dol.gov/agencies/whd/minimum-wage/state

Population estimates and American Community Survey

U.S. Census Bureau

Population, disability and cognitive difficulty rates, employment rates, household income.

Edition used: Vintage 2025 estimates; ACS 2024 1-year

• www2.census.gov/programs-surveys/popest/datasets/2020-2025/state/totals/NST-EST2025-ALLDATA.csv
• www2.census.gov/programs-surveys/acs/summary_file/2024/table-based-SF/data/1YRData

State personal income (SAINC1)

U.S. Bureau of Economic Analysis

Personal income for fiscal effort context.

Edition used: 2025 preliminary and 2024

• apps.bea.gov/regional/zip/SAINC.zip

Exempt Organizations Business Master File

Internal Revenue Service

The starting list of nonprofits, drawn by NTEE code, name and mission.

• irs.gov/charities-non-profits/exempt-organizations-business-master-file-extract-eo-bmf
• irs.gov/charities-non-profits/tax-exempt-organization-search

Form 990 e-file data

Internal Revenue Service

Each nonprofit's own website and mission text, taken from its Form 990 filing.

• irs.gov/charities-non-profits/form-990-series-downloads

Nonprofit Explorer

ProPublica

Form 990 records used to confirm nonprofits. 419 organization pages are cited on individual listings.

• projects.propublica.org/nonprofits

NPI Registry (NPPES)

Centers for Medicare & Medicaid Services

Most registry listings: NPI-2 organization records swept by disability-related provider taxonomy.

• npiregistry.cms.hhs.gov
• npiregistry.cms.hhs.gov/api-page

Community Care Licensing Facilities

California Department of Social Services, on data.ca.gov

California adult day programs (licensed and on-probation rows).

• data.ca.gov/dataset/community-care-licensing-facilities

2020 ZCTA to county relationship file

U.S. Census Bureau

Matching ZIP codes to counties so every county returns results.

• census.gov/geographies/reference-files/time-series/geo/relationship-files.2020.html

us-atlas and zipcodes

Open-source packages built from Census boundaries

State and county outlines and ZIP centers for the maps.

• github.com/topojson/us-atlas
• npmjs.com/package/zipcodes