Collection of Race, Ethnicity, Language (REL) Data in Medicaid Applications: A 50-state Review of the Current Landscape
Medicaid is a vital source of health insurance coverage for low-income children, adults, and individuals with disabilities; however, many individuals in Medicaid experience significant health disparities. Collecting and monitoring data on disparities by race, ethnicity, and language is an essential first step in any effort to reduce health disparities and address health equity. Today, all state Medicaid agencies collect self-reported data on race, ethnicity, and language (REL) from applicants during the eligibility and enrollment process. However, the type and granularity of information collected varies considerably, and many states continue to face longstanding and persistent challenges in collecting complete, accurate, and consistent data on REL.
This issue brief documents how states are collecting information about race, ethnicity, and language on their Medicaid applications. The information presented here draws from the State Health Access Data Assistance Center’s (SHADAC’s) review of 50 states’ paper Medicaid applications and 33 states’ online Medicaid applications. For this resource, the authors provide an overview of REL data collection standards and examine state Medicaid application’s question structure, answer options, and instructional language. They also provide an overview of the frequency of different iterations of questions and responses and provide state examples to illustrate common and unique data collection practices. Although other design factors, such as an application’s overall length, readability, or design layout undoubtedly impact user experience (and whether or not an applicant provides complete information), the authors did not assess applicants’ user experience in this report.
As the unwinding of the Medicaid continuous coverage requirement continues, both states and the federal government are tracking and monitoring the impacts of the resumption of eligibility redeterminations and disenrollments. Given the time-lags and caveats of CMS data, many states are publishing their own state data dashboards. To date, 46 states (including the District of Columbia) have released unwinding data in either an interactive dashboard or static pdf format, or are making public their required CMS Monthly Unwinding Data reports. This expert perspective includes an interactive map with links to state reporting, as well as a table tracking the unwinding indicators and disaggregated data that states are reporting on. SHVS will continue to update this EP as more states publish their unwinding data.
Given the potential to reduce coverage losses during the unwinding, there is intense interest in data that monitors transitions between Medicaid and Marketplace coverage. State-Based Marketplaces (SBMs) that operate their own eligibility platform should consider releasing available data on Marketplace transition outcomes. This expert perspective includes an interactive map with links to SBMs reporting Marketplace transitions, a table of the indicators that states are reporting on, and select data highlights. The expert perspective also highlights recommendations for SBMs when presenting unwinding data, such as providing context and making the data easy to use. SHVS will continue to update this EP as more SBMs publish unwinding data.
On November 15, 2023, the Centers for Medicare & Medicaid Services released its proposed 2025 Notice of Benefit and Payment Parameters, the annual regulation which governs core provisions of the Affordable Care Act. This expert perspective focuses on aspects of the proposed rule likely to be of interest to state officials, including requirements for State-Based Marketplaces to align with the standards of the Federally Facilitated Marketplace, proposals for states to update essential health benefits, and initiatives to ease the eligibility and enrollment process for consumers.
