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

By Stewart, Cara; Watson, Sidney D. | American Journal of Law & Medicine, May 2019 | Go to article overview

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


Stewart, Cara, Watson, Sidney D., American Journal of Law & Medicine


“These changes would put undue burdens on individuals already struggling to make a living. I have previously been on Medicaid while working two and three jobs to pay the rent. Having work hours added would have made the access to healthcare impossible with the hours I was already working. Vision and dental benefits are also not luxuries for many people. I am legally blind in one eye without correction. Not having access to vision care would prevent me from providing my own transportation to and from work.”1

This is the voice of Medicaid - someone's real-life story about what it means to be working poor in America and rely on Medicaid. The story is unedited and unabridged. This article discusses giving a voice to Medicaid and why it is important that Medicaid have a voice.

Medicaid should have a loud voice. It provides health insurance to one in five Americans (almost 76 million people) and is the nation's largest insurer - covering more people than Medicare.2 It provides coverage for one in three poor children, supplemental coverage for one in five seniors, and now covers 12.6 million working age, low-income adults through the Affordable Care Act's (“ACA”) Medicaid Expansion.3

In 2017, Medicaid had a loud voice as Congress debated bills to repeal Medicaid Expansion and cap federal funding for the program. Those proposals failed, in large part, because of an outpouring of support for Medicaid from people who shared their stories about what Medicaid means in their lives. Consumers told their stories to the press, in letters to the editors, phone calls, emails, and visits with elected officials. These personal stories brought to life what Medicaid means for the nation's most vulnerable. Families shared stories about how Medicaid provided for their grandmothers' nursing home care. People with disabilities shared their stories about how Medicaid home and community-based services allowed them to live in their homes and avoid being institutionalized. Parents caring for children with special needs talked about how Medicaid pays for the therapy and special equipment that allows their children to grow, develop, and thrive. Adults working low-wage jobs without employer-sponsored insurance talked about how the ACA-created, income-based category, commonly called Medicaid Expansion, provided them with health insurance, access to medical care, and financial peace of mind.

As the policy and legal battles move from Congress to federal and state agencies, how can Medicaid's consumer voice continue to be heard? In the 21st 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, these standardized comments do not capture the voice of Medicaid. They do not share people's personal experiences and insights.

This article offers a recipe that originated in Kentucky for giving voice to Medicaid in the administrative arena and during judicial review of administrative decisions. Part I explains how the ACA created new opportunities for consumers to be involved as administrative agencies implemented health reform. Kentucky consumer advocates crafted new avenues that allowed consumers to share their stories. Those stories influenced the administrative process and shaped the design of Kentucky's extraordinarily successful, state-based, health insurance Marketplace and Medicaid Expansion. However, in December 2015, Kentucky elected a new governor, who ran on a platform of repealing the Medicaid Expansion and the state-based Marketplace.

The new governor spearheaded an effort to obtain waivers under Section 1115 of the Social Security Act to allow the state to impose work requirements, premiums, income reporting requirements, and other conditions, along with reducing Medicaid coverage in the Kentucky. …

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