Giving Voice to Medicaid: Waivers, Public Comments and Kentucky's "Secret Sauce"

In the 21^st century the opportunity for the public to comment to an administrative agency typically means an invitation to go to a website, type words into a box, and hit send. Many advocacy groups provide templates for people to submit a statement in support or opposition to specific proposals. However, standardized comments do not capture the voice of Medicaid. They do not share people's personal experiences and insights. This article describes how consumer advocates in Kentucky devised a strategy, their Secret Sauce, to help consumers participate in the public comment process that is now required for Section 1115 Medicaid demonstration waiver applications. It shows how advocates can help real people's voices be heard in the public comment process, not through templates but through a process that assists people to tell their own stories in their own words. This is Medicaid's voice, the stories of real people who rely on Medicaid. Medicaid's voice can help policy makers understand the real-life impact of policy choices they make. It can also provide relevant evidence for courts reviewing the Secretary's grant of a Section 1115 waiver. Medicaid's voice can also help build political momentum, bringing those who rely on Medicaid to the polls and into the political conversation about the future of Medicaid.