Availability of Health Insurance Literacy Resources Fails to Meet Consumer Needs in Rural, Appalachian Communities: Implications for State Medicaid Waivers

PURPOSE: With the impending changes to state Medicaid programs and other health reform policies, it is imperative to understand the factors at play in promoting consumer health insurance literacy and health system engagement. This study examines the availability of health system and community‐based programs promoting health insurance literacy and supporting informed consumer health care decision making in rural communities in Kentucky. METHODS: Forty‐six health systems, community‐based providers, and outreach workers participated in 4 focus groups and 10 semistructured interviews. Descriptive and analytic coding techniques were used to identify 5 major themes and subthemes from interview and focus group transcripts. FINDINGS: Consumers were generally identified as having low health insurance literacy, especially in rural communities, serving as a barrier to accessing health care insurance and services. Participants identified their own lack of knowledge and understanding around health systems, resulting from lack of training and challenges with staying updated on constant changes in health systems and policies. Overall, consumer demand or need for health insurance literacy resources and programs far exceeded supply or availability. Constant changes in the status of Kentucky's Medicaid program and the proposed changes to eligibility, specifically work requirements and copays, have caused increased confusion among both providers and consumers. CONCLUSIONS: Findings indicate a pressing need for implementing programs that provide training, tools, and resources to outreach workers to help them better assist consumers with accessing and using health insurance, especially in low‐income, rural areas. Health reform policies need to be responsive to the health insurance literacy needs and abilities of consumers.