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

Facilities and accredited representatives

U.S. Department of Veterans Affairs

Veteran Services layer, 29 Sep 2026: 2,536 VA health care sites, Vet Centers, benefits offices, and national cemeteries from the VA facility locator, and 1,691 service offices built from the roster of VA-accredited representatives (grouped by work address; no individual is named).

• va.gov/find-locations
• va.gov/get-help-from-accredited-representative/find-rep

State veterans directories

State departments of veterans affairs

3,002 state agency, field office, county, city, and tribal veterans service offices, state veterans homes, and state cemeteries, each taken from the state's own published directory.

• va.gov/statedva.htm

Veteran grant recipients

USAspending.gov

567 VA grant recipients (Supportive Services for Veteran Families, Grant and Per Diem, adaptive sports, legal services, and suicide prevention grants), fiscal years 2025 and 2026.

• usaspending.gov

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

Form 990 grant and program records

Internal Revenue Service

Foundation grants for disability purposes (Schedule I and 990-PF) and organizations' own program descriptions (Part III), read from 1.7 million e-filed returns for 2024 to 2026. With links from members' resource pages, these found 1,411 Confirmed Profiles added on 28 Sep 2026, each checked against its own live website.

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

Common Core of Data and Private School Survey

National Center for Education Statistics

Public schools coded as special education schools (CCD 2023) and private schools whose program emphasis is special education (PSS 2023-24). 2,776 Registry Listings added on 28 Sep 2026.

Editions used: CCD 2023, PSS 2023-24

• nces.ed.gov/ccd
• nces.ed.gov/surveys/pss

Find Your Parent Center

Center for Parent Information and Resources

Federally funded Parent Training and Information Centers and Community Parent Resource Centers in every state.

• parentcenterhub.org/find-your-center

Provider of Services File (iQIES)

Centers for Medicare & Medicaid Services

Federal certification of ICF/IID facilities. 825 certified ICF/IIDs became Confirmed Profiles on 28 Sep 2026, and certification dates feed the Recent activity check.

Edition used: Q2 2026

• data.cms.gov/provider-characteristics/hospitals-and-other-facilities/provider-of-services-file-internet-quality-improvement-and-evaluation-system

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

College Search

Think College, Institute for Community Inclusion, University of Massachusetts Boston

The national directory of college programs for students with intellectual disability. Programs report their own details, including cost, length, housing, and funding. Its 375 published program pages became College Programs records on 5 Oct 2026.

Edition used: pulled 5 Oct 2026

• thinkcollege.net/college-search

Approved Comprehensive Transition and Postsecondary (CTP) programs

U.S. Department of Education, Federal Student Aid

The official list of colleges with a CTP program approved for Pell Grants, Federal Supplemental Educational Opportunity Grants, and Federal Work-Study. Used to mark which colleges can offer federal financial aid.

Edition used: list dated 9 Jul 2025

• studentaid.gov

Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID)

U.S. Department of Education, Office of Postsecondary Education

Federal model program grants. The 2025 project abstracts name every funded college and partner campus.

Edition used: FY2025 abstracts

• ed.gov TPSID FY2025 abstracts

State college program lists

State agencies and inclusive higher education alliances

State lists used to find programs not in the national directory, including Massachusetts MAIPSE partnerships, the North Carolina Community College System Access to Achievement report, the Florida Center for Students with Unique Abilities, the Minnesota Inclusive Higher Education Consortium, the Oklahoma IPSE Alliance, the California Center for Inclusive College, the Virginia Community College System, and the Pennsylvania Inclusive Higher Education Consortium.

• mass.edu/maipse
• fcsua.org
• mihec.ici.umn.edu
• okipsealliance.org
• cainclusivecolleges.org
• pihec.com

College autism support programs

College Autism Spectrum

A national list of support programs for autistic students in degree programs. Used as a lead list; every program was checked against its own college page.

• collegeautismspectrum.com

Vocational rehabilitation waiting lists

State VR agencies and WIOA state plans

Each college program shows its state VR agency and whether that agency has a waiting list, from the State of Support VR research. Programs also report whether students use VR funds.

• wioaplans.dol.gov