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.
On April 2, 2024, the Centers for Medicare & Medicaid Services released the final Notice of Benefit and Payment Parameters for 2025, the annual rule which governs core provisions of the Affordable Care Act. This expert perspective focuses on provisions of the final rule of interest to state officials, including requirements for State-Based Marketplaces to adhere to standards that align more with the Federally Facilitated Marketplace, improvements to the processes for states to determine and update essential health benefits, and initiatives designed to streamline the eligibility and enrollment process for consumers.