Collection of Self-Reported Disability Data in Medicaid Applications

The Issue

States are likely undercounting the number of people with disabilities in their Medicaid programs. Collecting better demographic data about the types of disabilities Medicaid enrollees experience is vitally important so that inequities can be identified, and resources and programs can be tailored appropriately. The objective of this brief is to provide an overview of current disability data collection standards and to document how states are collecting self-reported disability information on their Medicaid applications. The brief focuses on self-reported disability, which is separate and distinct from the disability evaluation conducted by the Social Security Administration to determine categorical eligibility for Medicaid.

Key Findings

• In spite of the fact that one-third of Medicaid enrollees report having a disability, only 11 percent of the Medicaid population qualified for Medicaid based on a disability determination in 2021.
• While the majority of states collect some type of data about disability as part of the Medicaid enrollment process, there is significant variation in how the information is collected.
  
• Only one state (Oregon) is collecting disability data in alignment with the current federal standards and some states are collecting self reported disability data using outdated or inaccurate language.
  

Conclusion

The collection of self-reported disability demographic data is a necessary first step in efforts to understand and monitor where health disparities are occurring for people with disabilities. We encourage state Medicaid programs to start thinking now about what changes can be made to improve the collection of self-reported disability data on their applications and to better align with federal disability data collection standards.

About the Author/Grantee

State Health and Value Strategies (SHVS) assists states in their efforts to transform health and healthcare by providing targeted technical assistance to state officials and agencies. The program is a grantee of the Robert Wood Johnson Foundation, led by staff at Princeton University’s School of Public and International Affairs. The program connects states with experts and peers to undertake healthcare transformation initiatives. By engaging state officials, the program provides lessons learned, highlights successful strategies and brings together states with experts in the field. Learn more at www.shvs.org.

This issue brief was prepared by Emily Zylla, Andrea Stewart and Elizabeth Lukanen. The State Health Access Data Assistance Center (SHADAC) is an independent, multi-disciplinary health policy research center housed in the School of Public Health at the University of Minnesota with a focus on state policy. SHADAC produces rigorous, policy-driven analyses and translates its complex research findings into actionable information for states. Learn more at www.shadac.org.

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