About ILDATA.org
An open project to give the Independent Living network data it can trust, instruments it can share, and definitions it can agree on.
What ILDATA.org is
ILDATA.org is a public website with three parts.
- Data. The public Program Performance Report datafiles that the Administration for Community Living (ACL) publishes for every Center for Independent Living (CIL), joined across report years 2016 to 2023, cleaned, and placed against Census disability population so reach can be measured. Each state and each Center has its own page. The method and the limitations are published alongside.
- Instruments. Surveys a Statewide Independent Living Council (SILC) or a CIL can use as they are: a Consumer Satisfaction Survey and a Community Needs Survey. They are built as real forms, tested for screen reader use, and available online, in plain text for print and braille, and as a hosted service with coded links for each partner.
- Standards. A proposal for common definitions, a question bank with stable identifiers, and an open response format, so that two states collecting the same thing produce data that can be pooled.
Who runs it
ILDATA.org is a project of Access100, a disability-led nonprofit in Honolulu, Hawaiʻi. Access100's board reads with screen readers, which is why accessibility here is a build requirement rather than a finishing touch. The site's code is open at github.com/PatrickGartside/ildata.org.
ILDATA.org is not part of ACL, of any state government, or of any SILC or CIL. It publishes public data and its own analysis of it. Where a number here differs from a number in an official report, the official report governs, and we would like to hear about it.
Where the data comes from
- ACL CIL Program Performance Report public datafiles
- One spreadsheet per report year, downloaded unmodified from acl.gov and logged with its retrieval date. A report year labelled N covers 30 September of year N to 29 September of year N plus one. ACL removes narrative and county-level detail before publishing, so neither appears here.
- ACL Independent Living Services (state) PPR datafiles
- The state-side companion reports for 2020 to 2023, used for the funding reconciliation measures.
- American Community Survey, 2019–2023 ACS 5-year estimates
- Tables B18101 and S1810, disability by age, sex and race for every state and county, from the Census Bureau's public summary files. The ACS counts the civilian noninstitutionalized population, so people living in nursing homes and other institutions are not in the denominator. That matters for Independent Living and is stated wherever reach is shown.
Raw files are never edited. Every correction happens in a published transform, so any figure on this site can be traced back to the byte-identical federal file. See measures and methods.
What it deliberately does not do
- It does not rank Centers as good or bad. It shows where a Center's reported numbers sit against peers of similar size and against its own history, and it says plainly what the data cannot support.
- It does not publish any individual's survey answers. Hosted survey results are visible only to the organization that collected them, as counts and exports, and contact details are stored apart from answers.
- It does not claim causal impact. The Program Performance Report is unaudited self-report with no comparison group. Everything here is a performance indicator, not an impact estimate.
- It does not track visitors. There is no analytics script and no third-party request on any page.
Help make it better
Corrections, additional public sources, and instruments other networks have tested are all welcome. Read how to collaborate or contact us.