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

I. ACA'S INVITATION TO INVOLVE THE CONSUMERS: HOW CONSUMERS' STORIES INFLUENCED ACA IMPLEMENTATION IN KENTUCKY

The Kentucky Equal Justice Center (“KEJC”) is a public interest law firm that advocates for and with low-income Kentuckians, working in partnership with legal services offices and other community partners. They undertake a broad range of advocacy, including litigation, legislative and administrative advocacy, and public education. ⁵ Since its beginnings in 1976, KEJC has engaged in traditional administrative advocacy: filing comments before state and federal agencies, and preparing templates so that partner organizations and individuals can craft their own comments.

With the passage of the ACA, KEJC's administrative advocacy in healthcare policy expanded, focusing on new ways to use the administrative law process for consumers to tell their own stories about how policy proposals impacted their lives, their healthcare, and their health. KEJC joined forces with two other state-wide organizations, Kentucky Voices for Health and the Kentucky Center for Economic Policy. Three full-time staff members and one part-time, short term employee led the efforts. ⁶

The ACA created new avenues for consumer involvement. For example, the ACA requires that state-based Marketplaces have a consumer advisory council. ⁷ As Kentucky began the process of designing its state-based health insurance exchange, ⁸ kynect marketplace, ⁹ three consumer advocacy organizations explored how to make sure that the consumer advisory council and its members had the education they needed to feel empowered and to be heard in the decision-making process. It did not seem realistic to try to create an army of consumers with deep knowledge about the details of health insurance policy, particularly since there were already policy experts at the design table. The expertise that consumers brought to the table was their lived experience. The health policy experts could offer promising theories on how a health insurance exchange might be designed. Consumers could vet policy ideas. Consumers had real life experience. They could explain how the theory would play out in practice. Consumers literally “put a face” on the policy issues.

The three consumer organizations began using short two and three question surveys to solicit information from consumers about their experiences. As one consumer advocate recalled, “I solicited information from everyone I exchanged money with: my hairdresser, the barista, the bartender.” In a “boots on the ground” campaign, fifteen legal services offices across Kentucky asked every client coming in for legal help two questions: (1) Are you insured? (yes/no); (2) Are you having any problems with your insurance? Those who did not have insurance were directed to an enrollment assister to sign up for Medicaid or private insurance. Those who needed legal assistance were referred to a KEJC lawyer.

The problems people described were tabulated and categorized. Systemic problems were brought back to the kynect consumer advisory council for action. Lots of consumers asked for more in-person help: kynect responded by opening brick and mortar stores in the state's two main shopping malls in Lexington and Louisville. Other people reported being confused by the enrollment website's welcome screen that asked people to indicate whether they were applying for “Medicaid, a QHP [qualified health plan] or a QHP with advanced premium tax credits.” Kynect changed the welcome screen to read “Show me all my options” so people could understand what their choices might be. Many enrollees and enrollment assisters complained that there needed to be a way to enroll via a mobile phone app because few people had access to a computer and high-speed internet. In March 2014, Kentucky became the first state to create a mobile enrollment app.

By January 2015, and with substantial consumer input, Kentucky was at the forefront of implementing the ACA. The state adopted the ACA's Medicaid expansion and kynect marketplace, was the nation's most successful Marketplace. ¹⁰ In 2014, Kentucky's first year of expansion, the percentage of adults with incomes below 138% of poverty dropped by almost half from 40% to 24% and nearly 83,000 people enrolled in private insurance plans through the kynect marketplace. ¹¹ Researchers attributed Kentucky's success to the system design features that consumers had identified as key: an aggressive outreach campaign, application assistance programs, and an integrated Medicaid and Marketplace eligibility determination process designed to get people signed up for whatever type of insurance they were eligible for no matter where they applied. ¹²

Then, in November 2015, in a surprise upset, the state elected a Republican governor, Matt Bevin, who ran on a platform to repeal both the kynect marketplace and the Medicaid Expansion. ¹³ The previous Democratic governor, Steve Beshear, who had spearheaded Kentucky's Medicaid expansion and state Marketplace efforts, was term-limited. A political novice, wealthy Louisville businessman and Tea Party favorite, Bevin ran an anti-establishment campaign and won with 52.5% of the vote. ¹⁴ Without an exit poll, it is hard to explain why Bevin won. ¹⁵ Some speculated that people who rely on safety net programs, like Medicaid, did not vote. ¹⁶ A Kaiser Family Foundation poll conducted in November and December 2015, showed that 72% of Kentuckians, voters and nonvoters alike, favored keeping the Medicaid Expansion, but 50% of those who voted for Bevin favored scaling Medicaid back and covering fewer people. ¹⁷

Governor Bevin began carrying out his campaign promises immediately. On December 30, 2015, in his first post-election address, Governor Bevin announced he would seek waivers under Section 1115 to “completely transform” Medicaid and suppress enrollment. ¹⁸

II. THE LAW OF SECTION 1115 WAIVERS

Medicaid is a joint federal-state program that provides federal financial assistance to states operating an approved Medicaid State Plan. ¹⁹ As a federal-state partnership, each state designs and operates its own Medicaid program within broad federal guidelines. ²⁰ Federal law outlines core mandatory State Plan requirements and consumer protections that state Medicaid programs must comply with for eligibility, covered services, and program administration, but state retain considerable flexibility to cover additional categories of eligibility and services, and to design delivery systems. ²¹ States may also seek waivers from the Secretary of HHS to allow them to ignore certain federal Medicaid requirements and still receive federal funds. ²²

The ACA amended the Medicaid statute to create a new category of eligibility requiring states, for the first time, to cover low-income adults ages 18-64 with incomes up to 133% of the federal poverty level, $16,738 for a single person, through an approved Medicaid State Plan amendment. ²³ While Congress intended the Medicaid Expansion to be a new, mandatory eligibility category that states had to cover, the Supreme Court's decision in National Federal of Independent Business v. Sebelius, effectively allows states to decide whether or not to adopt the expansion. ²⁴

Kentucky, along with 27 other states adopted the ACA's Medicaid Expansion via a straight forward, State Plan amendment. ²⁵ However, nine states have Section 1115 Medicaid demonstration waivers allowing them to implement Expansion while ignoring protections in the Medicaid statute. ²⁶ Immediately after his election Governor Bevin announced that he intended to roll back Medicaid Expansion by requesting demonstration waivers to allow Kentucky to impose new conditions on eligibility not authorized by the Medicaid statute. ²⁷

Demonstration waivers are authorized by Section 1115 of the Social Security Act. ²⁸ That section allows the Secretary of HHS to waive certain provisions of the Medicaid statute for a limited period of time to allow states to engage in “experimental, pilot or demonstration” projects that are “likely to assist in promoting the objectives of” the Medicaid statute. ²⁹ Although not required by statute, under long standing agency policy, demonstration projects are supposed to be budget neutral for the federal government. ³⁰

Before the ACA, states and HHS often negotiated Section 1115 Medicaid waivers in closed door sessions. The public sometimes did not know that a waiver was being considered until the approval was announced. ³¹ In response, the ACA added a new section 1115(d) providing for public notice of a Medicaid waiver applications, “meaningful opportunities” for public input, and posting of the administrative record online. ³²

Section 1115(d) now requires that states proposing a Medicaid demonstration waiver must make publicly available a draft waiver application, described in sufficient detail to allow “meaningful input from the public” prior to submitting the waiver to the federal government. States must post the draft waiver application on a state website and allow the public to sign up for an email list to be kept apprised of the waiver application process. ³³ A public comment period is required, and the public must be able to submit comments either online or by mail. ³⁴ The state must also hold at least two public hearings. ³⁵ The final waiver application submitted to HHS must document the public process, provide a “report of the issues raised by the public during the comment period,” and “how the state considered such comments.” ³⁶

After a waiver application is submitted to the federal government, Section 1115(d) provides for another 30-day comment period. The waiver application and supporting documents must be posted on the Centers for Medicare and Medicaid Services (“CMS”) website along with an email and mail address through which the public may comment. ³⁷ CMS must “review and consider all comments received by the 30-day deadline,” but it does not have to respond to comments in the waiver approval document. ³⁸ The public comments become part of the administrative record. ³⁹ Public comments muse be posted online, along with other specified parts of the administrative record. ⁴⁰

The ACA's new public comment provisions help to build a more robust administrative record for purposes of administrative review. The Secretary's grant of a Section 1115 waiver is subject to judicial review pursuant to the Administrative Procedure Act. ⁴¹ Courts will reverse the Secretary's grant of a waiver when it is arbitrary capricious, an abuse of discretion or otherwise not in accordance with law. ⁴² The administrative record must demonstrate that the Secretary has examined the record and made a determination that the waiver is for “an experimental, pilot or demonstration project,” is “likely to assist in promoting the objectives of the Act,” and has an appropriate “extent and period. ⁴³ While courts have not required formal findings, the record must be sufficient to support the agency action, show that the agency considered the relevant factors, and enable the court to review the agency decision. ⁴⁴

III. KENTUCKY'S WAIVER APPLICATION, PUBLIC COMMENTS AND JUDICIAL REVIEW

On June 22, 2016, Governor Bevin unveiled the state's draft Section 1115 demonstration waiver application, called Kentucky HEALTH. ⁴⁵ The draft waiver application requested permission to roll back Medicaid enrollment through a combination of new eligibility conditions including work requirements and premiums. ⁴⁶ The draft waiver application called for ACA Expansion adults and parents to spend twenty to eighty hours a month on specified work and community engagement activities like employment, job training, job search and volunteer work. ⁴⁷

The draft application also proposed imposing premiums of up to 5% of income, reducing benefits, and locking people out of Medicaid coverage for failure to pay monthly premiums or timely renew eligibility. ⁴⁸ The state estimated that these new proposed rules would result in 86,000 Kentuckians losing Medicaid coverage. ⁴⁹

The Kentucky HEALTH draft waiver application sparked immediate controversy. ⁵⁰ Under the Obama Administration, HHS had concluded that the Secretary did not have authority under Section 1115 to allow states to impose work requirements as a condition of eligibility. ⁵¹ Experience with programs that allow work requirements show that they rarely lead to good paying jobs. Most adults covered by Medicaid already work and it is people who are working who lose coverage because work reporting requirements are confusing and difficult for low income workers to comply with. ⁵² Decades of research confirm that premiums and copays create significant barriers to Medicaid eligibility and coverage, reduce enrollment and increase the number of uninsured. ⁵³ By April 2016, Kentucky's Medicaid Expansion provided coverage for 428,000 Kentuckians. The state estimated that the draft waiver application would result in about 86,000 Kentuckians losing coverage over five years. ⁵⁴ Others estimated the coverage losses to be much higher: A study by public health researchers predicted 175,000 to 297,500 people would lose coverage in the first year alone. ⁵⁵

The same day the state revealed the Kentucky HEALTH draft waiver application, it announced a thirty-day public comment period ending July 22, 2016 at 5:00 p.m. ⁵⁶ People were told they could submit comments via email or letter. The state also announced three public hearings: Bowling Green, population 65,243, in six days; Frankfort, population 27,885, in seven days; and the final hearing in Hazard, population 5,300, in two weeks. ⁵⁷ Kentucky has two metropolitan areas with populations over 100,000, Louisville and Lexington; neither would be a site for a public hearing.

On August 24, 2016, the state filed the Kentucky HEALTH waiver application with HHS, which was substantially similar to the draft application with proposals for a graduated work requirement, premiums of up to 5% of income, benefit reductions, and lock outs of Medicaid coverage for six months or more for failure to pay monthly premiums or timely renew eligibility. ⁵⁸ It estimated that 95,000 Kentuckians would lose Medicaid, an increase of about 10,000 from the draft application. ⁵⁹ The state certified that it had provided the required 30-day public comment period and three public hearings, and noted that it extended the public comment period an additional three weeks to accommodate the large volume of comments.

The waiver application said the state received 1,400 public comments, with “the overwhelming majority of the comments” being about the proposed elimination of allergy testing as a covered benefit which was deleted from the waiver application in response to comments. ⁶⁰ According to the state, 16% of the comments, 224, were about new premium requirements, and “relatively few,” 12%, 168, addressed the proposed work requirement. ⁶¹ The state noted that “several commenters supported” the work requirement, and among those who opposed it, “many had questions.” ⁶² Consumer advocates contested the state's characterization of the public comments, and filed an administrative complaint under the state's Open Records Act to obtain access to the comments. ⁶³ In fact, the comments submitted to the state overwhelmingly opposed the waiver application, detailing the problems created by work requirements and premiums.

On September 8, 2016, HHS posted Kentucky's waiver application on the CMS website and announced that the required federal comment period would run through October 8, 2016. ⁶⁴ On October 19, 2016, CMS posted a letter explaining that CMS had received over 1,800 comments on Kentucky's waiver application. CMS stated that “given the large volume of comments already received, we know that we will need time to carefully consider the public input and discuss it with you.” They also indicated that while federal regulations did not provide for a formal extension of the federal comment period, they would continue to consider comments submitted after the original close of the federal comment period. ⁶⁵ Public comments continued to trickle in through January 4, 2017. ⁶⁶

In the meantime, on November 7, 2016, Donald Trump was elected president. President Trump, like Gov. Bevin, ran on a platform to repeal Medicaid Expansion and the ACA. On January 20, 2017, the day he was sworn into office, President Trump issued an Executive Order stating that the policy of his administration is to seek repeal of the ACA and directing the Secretary of HHS, and others, to “exercise all authority and discretion” to waive implementation of the ACA, give states greater flexibility, and “take all actions consistent with law to minimize” the Act's impact. ⁶⁷ New Section 1115 Medicaid waiver policies were about to be announced.

On March 14, 2017, Seema Verma, the Trump Administration's newly appointed Administrator for the Centers for Medicare and Medicaid Services (CMS) and the consultant who drafted Kentucky's waiver application, ⁶⁸ and Tom Price, then-Secretary of the Department of Health and Human Services (HHS) sent a letter to state governors. It notified states that HHS now considered the ACA's Medicaid expansion “to non-disabled, working age adults without dependent children a clear departure from the core, historical mission of the program.” ⁶⁹ The letter signaled CMS's intent to begin using its Section 1115 demonstration authority to approve state demonstration projects that include “training, employment and independence. ⁷⁰

On July 3, 2017, Kentucky submitted an amended waiver application requesting, among other new waivers, permission to increase the work requirement to 80 hours per month work for all, rather than the graduated hours as originally proposed, and add a lockout for failure to report a change in income. ⁷¹ According to the state, these new waiver requests would result in a demonstration in which 95,000 Kentuckians were predicted to lose Medicaid coverage, 15% of those who had gained coverage under the ACA Expansion. ⁷²

In a press release issued the same day, Kentucky notified the public that the state had made “operational modifications” to the waiver requests that were a “logical outgrowth of the original waiver application and “minor revisions” and thus notice and comment were not required. ⁷³ The state indicated, however, that it was providing a “voluntary” 30-day public comment period to run through August 2 and two public forums, in Somerset, population 487, and the capitol, Frankfort, population 27,885.

The state comment period would run concurrently with a new federal public comment period. ⁷⁴ In its waiver modification request submitted to CMS, Kentucky said,

Documents posted to the Medicaid.gov State Waivers List website do not indicate whether CMS agreed with Kentucky's assertion that the state's requested amendments to the Kentucky HEALTH failed to trigger state and federal public comment periods pursuant to federal regulations. ⁷⁶ CMS did announce a 30-day new federal comment period to run through August 2, 2017.⁷⁷ This time around, 1,300 people and organizations submitted public comments to CMS. ⁷⁸

What is clear is that CMS and Kentucky concocted a public comment process neither contemplated nor sanctioned by the regulations. To be heard, the public would have to file two sets of comments simultaneously on a “draft” waiver request, one with the state and the other with the federal government. The public would have no opportunity to comment on the “final” waiver request that would be the subject of ongoing negotiations between the state and CMS. In fact, no final waiver request has ever been posted to the CMS website nor otherwise shared with the public. ⁷⁹

On January 11, 2018, HHS cleared the way to approve Kentucky's waiver application: It issued a State Medicaid Director Letter officially reversing its prior policy and announcing new policy to approve Section 1115 demonstration projects that impose work and other community engagement requirements as a condition of Medicaid eligibility. ⁸⁰ One day later, on January 12, 2018, HHS approved the Kentucky HEALTH waiver application. The waivers granted included provisions for the 80 hour a month work requirement, premiums of up to 4% of income, benefit reductions, income reporting rules. It also included a six-month lockout for those who failed to comply with the work rules, premiums, income reporting rules or timely renewal. ⁸¹

The cover letter accompanying the Special Terms and Conditions, which set forth the terms of the approval, acknowledged that both the state and federal governments received a “large volume of comments.” ⁸² CMS confirmed it had reviewed “all the public comments it received, when evaluating whether the demonstration as a whole was likely to promote the objectives of the Medicaid Act.” ⁸³ The letter catalogues some of the comments received in opposition to the work requirements, responding that the state had exempted those who are medically frail and CMS had “considered these comments and decided to allow states to test the implementation of community engagement requirements in Medicaid, subject to the parameters set out in the January 11, 2018 state Medicaid directors letter.” ⁸⁴

On January 24, 2018, sixteen Kentucky Medicaid enrollees filed Stewart v. Azar, a federal court class action lawsuit, claiming HHS acted illegally in issuing the work requirement policy and approving the Kentucky demonstration waiver. ⁸⁵ Stewart I is the first legal challenge to the Secretary's approval of a Section 1115 waiver in which the waiver approval process was subject to the ACA's new public comment requirements and implementing regulations. The administrative record in the case is robust: 5,532 pages, including over 2,479 pages of public comments submitted during the two federal comment periods. ⁸⁶

On June 29, 2018, two days before Kentucky HEALTH was to take effect, the district court ruled for the plaintiffs in Stewart I, vacated HHS's approval of Kentucky's demonstration, and remanded Kentucky's demonstration application to HHS for further consideration. ⁸⁷ The court held that the Secretary's approval was arbitrary and capricious because he failed entirely to consider the demonstration waiver's impact on Medicaid coverage for Medicaid Expansion adults and parents. ⁸⁸ HHS argued that the ultimate purpose of Medicaid is to promote health and wellbeing, and thus the Secretary did not need to be concerned about loss of coverage to test a demonstration hypothesis about other ways of improving health. ⁸⁹ The court rejected this argument, holding that heathier people may be “one consequence” of providing Medicaid coverage, but Medicaid's “core concern” is to provide coverage and care and “to provide that care generally free of charge.” ⁹⁰ The court also held that the Secretary may not favor coverage for traditional eligibility groups—the aged, blind and disabled and families with dependent children—at the expense of the newly eligible ACA Expansion adults. ⁹¹ While states have the choice whether to cover the Medicaid Expansion group, once covered, the expansion group is a category of eligibility on “equal footing with other ‘vulnerable’ populations.” ⁹²

The court found that HHS had ignored evidence in the administrative record, including public comments, about the waiver's negative impact on coverage. ⁹³ The court pointed to the state's own estimate that 95,000 Medicaid Expansion adults and low income parents would lose coverage. ⁹⁴ Judge Boasberg found that public comments “voiced concerns that Kentucky HEALTH would ‘significantly reduce low-income people's participation in health coverage programs.’” ⁹⁵ The court noted that the public comments included “extensive research, including from past Medicaid demonstrations” documenting how work requirements and premiums reduce enrollment. The court cited twenty-five public comments in the administrative record, specifically citing sixteen comments submitted by various consumer-focused organizations. ⁹⁶

The court also relied on public comments from Medicaid consumers, families, friends, and social service agencies that told real-life stories about how, in the court's words, “these new administrative requirements would increase ‘clerical and tracking errors and delays,’ which in turn would ‘cause inadvertent terminations.’” ⁹⁷ As one family member said in a comment cited by the court:

A social worker the court cites said in her public comment:

As the court noted, the Secretary is not required to address each comment in writing, but he must at least consider these objections. ¹⁰⁰ The court vacated the waiver approval and remanded Kentucky's demonstration application to HHS for further consideration of these comments and other evidence in the administrative record. ¹⁰¹

Upon remand, HHS decided to open yet another federal public comment period. This time around, 8,583 people and organizations submitted “unique, substantive” comments to CMS. ¹⁰² On November 20, 2018, CMS approved the Kentucky HEALTH project for the second time with an effective date of April 1, 2019. ¹⁰³

In its re-approval, CMS noted that the vast majority of the 8,583 public comments were submitted by “self-identified Kentucky citizens who opposed either the demonstration as a whole or certain features of it.” ¹⁰⁴ CMS also acknowledged that “[m]any of these comments expressed general concerns that the demonstration will result in many poor citizens losing Medicaid.” ¹⁰⁵ The approval took issue with commenters who interpreted Kentucky's projections as predicting 95,000 people would lose coverage, re-interpreting the state projections to predict only a 5% drop in coverage, or 32,000 people losing coverage. ¹⁰⁶ The re-approval letter did not comment on the research studies submitted my commenters that concluded that the loss of coverage would be much higher than 95,000. The only response to public comments from citizens about how the project's new requirements would increase “‘clerical and tracking errors and delays,’” and “’cause inadvertent terminations’” ¹⁰⁷ was a statement that coverage losses “would only occur only if the individual chooses not to comply with these requirements.” ¹⁰⁸

On January 17, 2019 plaintiffs in Stewart v Azar filed another motion for summary judgement claiming that the Secretary again abused his discretion by, among other things, ignoring public comments about the negative impact the demonstration would have on Medicaid coverage. ¹⁰⁹ On March 27, 2019 the court vacated the Secretary's second waiver approval finding that the Secretary had once again failed to adequately address public comments in the administrative record about how the project would result in a loss of Medicaid coverage. ¹¹⁰ The court cited twenty public comments as providing evidence of how the project would negatively impact enrollment. ¹¹¹

Stewart v Azar is the first lawsuit challenging the Secretary's approval of a Section 1115 Medicaid demonstration waiver since the agency has been bound by regulations implementing the ACA's section 1115(d) requirements for public notice of Medicaid waiver applications, “meaningful opportunities” for public input, and posting of the administrative record online. ¹¹² Section 1115(d) created an opportunity for the public to create a full and robust administrative record via public comments. Those comments, both the research studies filed by experts and researchers and the stories submitted by Medicaid consumers provided evidence that the court relied upon in finding that the Secretary had abused his discretion by ignoring their concerns about how the waiver would impact Medicaid coverage in Kentucky.

PART IV. THE SECRET SAUCE: WHY CONSUMER VOICE IS IMPORTANT

When Governor Bevin unveiled the first draft Kentucky HEALTH waiver, Kentucky Equal Justice Center (“KEJC”) and Kentucky Voices took the lead in reaching out to consumers and encouraging them to submit public comments. ¹¹³ While ultimately over 13,000 people submitted comments during one of the five rounds of state and federal public comment periods, their primary goal in helping consumers file comments was never quantity, but quality. Quantity gets attention from the press. But what the consumer voice adds to this, and other policy discussions, are the narratives, the specificity, and the stories. Consumers can explain how the proposed new work requirements, premiums and reporting rules will work—or not work—in real life.

Figuring out a way to help Medicaid consumers submit descriptive email comments that reflect their own voices and life experiences turned out to be key. While federal regulations require CMS to provide the public with both email and mail addresses to submit comments, the CMS website notice of federal comment period “encourages” email comments and only provides a link for submitting comments via email. At the state level, public hearings should have provided a welcoming venue for people to stand up and tell their stories, something that many citizens find easier to do that writing comments. However, during the first round of state public comments, Kentucky gave the public less than a week's notice for two of the hearings. ¹¹⁴ Hearings were held hundreds of miles from the state's largest cities, and most people could not make the trek to the hearing sites on such short notice. ¹¹⁵

Submitting public comments via email turned out to be relatively complicated. At the state level, Kentucky required that comments be typed into an online box and limited comments to some undisclosed number of words, cutting short some commenters, blocking others, and preventing people from writing letters and then uploading them to the state website. At the federal level, the website allows people to upload letters and has no word limit, but the site first asks commenters to create an account with the federal government indicating name, email address, display name, and suggests that the commenter create a public profile and upload a photograph. ¹¹⁶ Many people were reluctant to create such an account. For others, the registration process was simply too complicated and confusing to navigate. ¹¹⁷

Consumer advocates also realized that they needed a system to track email comments submitted to the state. Federal regulations require that comments submitted to the federal government be posted online but contain no similar requirement for state governments. ¹¹⁸ The state's final waiver application submitted to the federal government must report and respond to comments raised by the public during the comment period, but Kentucky's August 24, 2016 Kentucky HEALTH waiver application's characterization of the comments it received was inaccurate and misleading. ¹¹⁹ KEJC knew that consumers had submitted over 1600 email comments expressing specific concerns and providing detailed accounts of how the proposed work requirements would impact their lives, but according to the state only 168 comments addressed the work requirement, “several” comments supported it and among those who opposed it, “many had questions.” ¹²⁰ KEJC knew this characterization was wrong. ¹²¹

The online dialogue box through which people submitted their comments turned out to be the biggest hurdle: that blank box was the enemy of detail. Consumers did not know what they should write, what was appropriate to write, or what kinds of comments would be considered. KEJC needed to create a conversation within the community to help consumers understand the proposed changes in the waivers so that consumers could then weigh in with specificity about how the new rules would impact them. All this had to be done within the thirty-day time frames for the public comment periods.

Kentucky Voices for Health and KEJC designed a three-minute survey that gave people information about the proposed waiver and a structure for telling their stories about how those changes would impact their lives. Survey Monkey was easier for people to use than the government websites. The survey format both educated people and gave them a framework for telling their stories. The concept was to ask Kentuckians about their own experiences, rather than asking them to comment on the changes. The survey asked people to tell about their interactions and experiences with Medicaid and how the proposed waiver changes would impact them.

The survey asked:

KEJC and KVH submitted the stories collected via Survey Monkey verbatim to the public comment websites. KEJC did not edit, alter, or delete comments. Comments both pro and con were submitted. The survey helped consumers tell their stories and those unmediated stories were submitted to the public comment websites.

KEJC also began using consumer stories to inform people about the public comment process and to encourage them to participate. Kentucky Voices for Health bought ads in local papers in all eight regions throughout the state that highlighted consumer stories from the area. Consumers in Rowan County saw a quote from a “school bus driver in Rowan County.” The coalition kept the quotes as personal as possible without identifying people except where and how individuals choose to be identified. Some asked that their name be included and so it was, others asked specifically to remain anonymous. Here is an example of one of the ads.

OPEN IN VIEWER

Kentucky's Secret Sauce, a three-minute survey that educates and frames people's stories, is a powerful vehicle for giving voice to consumers. Consumers do not need to become lay policy experts to have something meaningful to say. By explaining their lived experience and putting a face on the policy choices, they contribute to the policy debate. The survey helps the understand the debate and frames their stories as part of that debate.

While developed in Kentucky, the Secret Sauce is replicable elsewhere: it travels well. In Tennessee, consumer advocates used the recipe to generate over 13,000 comments during the federal comment period for a proposed Section 1115 waiver to impose Medicaid work requirements in that state. ¹²²

Policy decisions about Medicaid should be evidence-based and data driven, but we also need consumers’ stories to understand how research translates into practice, how policy should respond, and to prompt action. When consumers tell their stories, they create a narrative that makes sense of policy choices. It brings the policy choice to life. Neuroscience teaches us that human brains are hard-wired to need and use stories to interpret the world. ¹²³ Stories create a narrative frame through which we are able to interpret numbers, statistics, and research data. They humanize the data, prompting understanding and compassion when numbers can feel overwhelming.

Real people's stories can influence agency decision making. Under traditional administrative law principles, public comments are important because they better ground the agency in the values and interests of the people subject to the action. ¹²⁴ Public comment “assures the agency will have before it facts and information relevant to the particular administrative problem, as well as suggestions for alternative solutions.” ¹²⁵

The Kentucky experience illustrates how agency decision making improves when agencies are open to hearing from Medicaid consumers. During the early stages of ACA implementation in Kentucky, the state was a poster child for using consumer input to identify pitfalls and problems, identifying consumer-friendly alternatives, and improving agency decision making and agency system design. Consumer input helped Kentucky create the country's most successful marketplace and Medicaid enrollment process. ¹²⁶

The Kentucky experience also shows how Medicaid consumers can provide critical evidence for reviewing courts when agencies decide to ignore the voice of Medicaid. Throughout the Kentucky HEALTH application process, the state set up public comment processes that seemed to signal that the state had already made its decision that the project would include work requirements, premiums, and other burdensome reporting requirements. The Secretary of HHS brushed aside consumer concerns submitted during the federal public comment period. The federal district court overturned HHS's approval of the Kentucky HEALTH waiver because the Secretary of HHS ignored the voice of Medicaid.

Real people telling their Medicaid stories can also build momentum for political participation, including voting, giving Medicaid a stronger voice in the political arena. As one Kentucky political strategist is quoted as saying, “People on Medicaid don't vote.” ¹²⁷ This quip may not be literarily true, but poor people are less likely to vote than more affluent people. ¹²⁸ Medicaid enrollees are less likely to vote, less likely to register, and less likely to engage in other forms of political engagement than other poor people. ¹²⁹ As political scientist Jamila Michener's research shows, people enrolled in Medicaid often feel stigmatized by state Medicaid policies. ¹³⁰ They can feel frustrated by differences in the way the program is administered across states and even local communities. ¹³¹ When Medicaid is administered via processes that are belittling and degrading, enrollees come to believe that it is hopeless to try to change the system and influence policy. ¹³² They disengage.

Michener's research also found that state Medicaid policies can boost political participation rates. ¹³³ Medicaid enrollees living in states with a wide scope of services, well-funded state offices, and expanding Medicaid programs are more likely to register to vote and participate in the political process more generally. ¹³⁴ On the other hand, Medicaid enrollees living in states that have recently cut benefits are significantly less likely to register, vote or participate. ¹³⁵ In short, Medicaid policy expansions boost political participation and Medicaid policy retrenchments suppress political participation. ¹³⁶

Telling one's Medicaid story, as thousands did during the Kentucky HEALTH public comment periods, can create an empowering experience that encourages political participation. As the waiver process unfolded, Medicaid consumers thought the waiver process was stacked against them and they did not know that they could influence the administrative process. However, in our system of checks and balances, a federal district court reviewed the agency decision and ruled that the Secretary of HHS acted arbitrarily in approving Kentucky HEALTH. The court decision was a powerful acknowledgement that Medicaid's consumer voice counts. It helped energize over 8,000 people, “mostly Kentucky citizens,” to file comments during the next round of public comments. ¹³⁷ Hopefully, it will energize these Kentuckians to register and vote in the upcoming Kentucky gubernatorial election where Governor Bevin is running for re-election.

CONCLUSION

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 also 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.