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Lawmakers press OHA on gaps in REALD/SOGI data for people with intellectual and developmental disabilities
Summary
During the Feb. 11 informational meeting, legislators pressed OHA staff about the integration of REALD and SOGI data and whether people with intellectual and developmental disabilities (IDD) are identifiable and tracked in those datasets; OHA said rules are in place but data integration is incomplete and staff will follow up.
SALEM, Ore. — Lawmakers at a Feb. 11 joint Subcommittee on Human Services hearing pressed Oregon Health Authority staff about gaps in REALD (race, ethnicity, language, disability) and SOGI data collection and the ability to identify people with intellectual and developmental disabilities in statewide data systems.
Representative Nelson asked how REALD and SOGI data have been used to reduce racial disparities. Claire Pierce Scribe, HPA director, said the equity and inclusion division oversees REALD and SOGI and that integrating those data with a future state-based marketplace will enable more targeted outreach. She added that the data allow the agency to see “where we should focus” and to use dashboards and performance metrics to promote transparency and targeted interventions.
Senator Gelser raised concerns that during the pandemic it was “very difficult to distinguish people with disabilities,” particularly people with intellectual and developmental disabilities (IDD), who often were grouped with other conditions such as dementia in available datasets. The senator said that IDD populations — especially those in congregate care settings — experienced elevated death rates and remain “invisible” in some presentations and strategic planning materials.
Dave Baden, deputy director for policy and programs, told the committee the state had made progress in pandemic vaccine distribution by using more disaggregated REALD data and cited a specific example: “There was this very specific example about Pacific Islanders on the coast. We were not doing as well of figuring out access spots that made sense. That got elevated because we have the data.” Baden and Pierce Scribe both said rules and standards for REALD data exist but that connecting all datasets — including claims, public health records and congregate care reporting — is ongoing work.
OHA said it will follow up with specific information. Pierce Scribe said the equity and inclusion division will present in a subsequent meeting and that Alfonso Ramirez, who works in that office, would address details about repository development and dataset integrations. The agency committed to returning with more precise status on what data sources have been integrated and where gaps remain.
Why it matters: Legislators said identifying people with IDD in administrative and public health data is essential for targeted outreach, service planning and monitoring outcomes. Committee members described long‑standing frustration that the population remains undercounted in many reports, limiting the state’s ability to measure disparities and provide tailored supports.
No formal action was taken during the informational meeting; OHA staff said they would provide follow-up information on the REALD/SOGI repository and the status of IDD data integration.
