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Last November, Utah voters simultaneously approved a ballot measure to expand Medicaid and elected a state government opposed to that expansion. The result is that the state hasn’t fully extended Medicaid eligibility while it spends extra money to cover fewer people. Ad Policy

As residents suffer without access to affordable care, an increasing number of Utahns are fed up. The Utah Health Policy Project, a nonpartisan group working on health care solutions in the state, submitted over 1,600 comments to state authorities, and has now collected almost 6,000 more responses to its survey. Reading through the whole collection, two consistent trends emerge.

First and foremost, the state is putting people in danger by blocking access to care. Second, the state is turning down federal money because of the GOP’s nonsensical anti-Medicaid ideology.

Utah isn’t alone. Since 2017, when the GOP failed to repeal the Affordable Care Act, the fight over publicly funded health care has largely moved to the states. Conservative governments are deploying work requirements and other administrative burdens to reduce the number of Medicaid recipients. Voters, meanwhile, used the 2018 elections and ballot initiatives to expand Medicaid in deeply conservative states like Utah, Idaho, and Nebraska, setting up showdowns between the clearly expressed will of the voters and their governments. Nowhere has the struggle been more convoluted than in Utah. More on Medicaid How Does Losing Medicaid Help You Get a Job? Bryce Covert Work Requirements Failed Once, and They’ll Fail Again Bryce Covert A Federal Judge Strikes Down Arkansas’s Medicaid Work Requirement Bryce Covert

Instead of complying with the ballot initiative, the Utah legislature moved quickly last winter to avoid full implementation of Medicaid expansion by passing SB 96, a set of procedures that drags out the expansion for years while imposing new barriers to obtaining Medicaid. The governor, for his part, claims that these measures are necessary to make the expansion “financially sustainable” and to balance “Utah’s compassion and Utah’s frugality.”

The Centers for Medicare and Medicaid Services (CMS), part of Health and Human Services (HHS), helped the state impose the two standard GOP moves to limit Medicaid: work requirements and per capita caps. Under the Medicaid statute, states have the right to apply to the CMS for waivers to “test new approaches in Medicaid that differ from what is required by federal statute.” Trump administration officials, therefore, have a lot of say over the degree to which state governments can deviate from the broad expansion authorized in the ACA. First came work requirements in Arkansas, Kentucky, Utah, and other states, which require Medicaid recipients to demonstrate consistent effort to find work or apply for a waiver due to disability or other exceptions. Trump’s CMS has approved such waivers, even as courts in subsequent lawsuits keep ruling them contrary to the basic mission of Medicaid: providing health care to those who need it. Now Utah is a test case for the second move, imposing “per capita caps.”

Traditionally, Medicaid is funded at a set rate; for every dollar a state spends, it gets between $1 and $3 from the federal government. There’s no set cap on the total number of federal dollars; that is pegged to actual need. The GOP has been trying to set caps since the 1980s. Medicaid expansion under the ACA increased eligibility from households at 100 percent of the federal poverty line to those at 138 percent, with the federal government initially covering 100 percent of all increased costs and settling at 90 percent by 2020. Current Issue View our current issue

So far, the CMS has accepted Utah’s waiver requests for work requirements and to impose caps, but rejected a request for more federal funds in order to cover a limited pool of qualified applicants. Utah had wanted the full ACA funding but wanted to offer Medicaid only to the people at or below the poverty line. The CMS declined because, according to its response letter, doing so “would invite continued reliance on a broken and unsustainable Obamacare system.”

And yet despite conservative opposition, the core Medicaid statute and the ACA expansion remain the law of the land. So now Utah’s government has a choice. It can go ahead and pursue the full expansion of the program, as authorized by the ACA and mandated by the state’s voters, or it can spend more state money to cover fewer people. So far, Utah’s legislators have selected the second option.

Stacy Stanford, a health policy analyst with Utah Health Policy Project, laid out the twists and turns of the last eight months over the phone with me. “It’s definitely been a roller coaster,” she said, since the “governor and legislative leaders started plotting their repeal effort.” Instead of full Medicaid expansion, SB 96 laid out a four-phase process requiring multiple rounds of federal approval, each of which can slow down expansion. Phase 1, which lasts through 2019, kept the federal match at the “70/30” rate, with the federal government providing only 70 percent of the funds, not the 90/10 rate authorized by the ACA, while limiting Medicaid to those at 100 percent of the poverty line. Phase 2 keeps expansion at the 100 percent level, but asks for 90/10 reimbursement and imposes the per capita cap and work requirements. Phases 3 and 4 push forward to the full expansion with the full ACA reimbursement, maintaining the caps and work requirements to limit access to the program. Stanford sums up these wonky details by explaining, “We’re currently paying three times more to cover about half as many people.”

Stanford told me that the work requirement is not designed to help people get jobs. “The work reporting requirement is just bonkers,” she said. “It includes a requirement to complete 48 job applications,” for example, before one can apply for a waiver. “If you get a job, you can file for an exemption, but there’s paperwork for the exemption, or if you’re a caregiver, if you’re disabled.” She paused, frustrated: “They think advocates are opposed to requiring work, [but] our concern isn’t requiring work, our concern is the paperwork barrier, and they made that worse instead of better.”

Again, Utah isn’t alone. Georgetown public-policy professors Donald Moynihan and Pamela Herd have studied the ways that governments impose “administrative burdens” to limit access to government services. In their book on the subject, Herd and Moynihan find that across the board—not just Medicaid, but also regarding driver’s licenses, voting, and other services—conservative governments impose significantly higher administrative burdens on their constituents. The 48-application requirement is a perfect illustration of their thesis. It’s not about getting people off Medicaid and into jobs, but raising a barrier to the public service for those least able to cope.

Via e-mail, I asked Herd and Moynihan to explain the root of the GOP opposition to expanding Medicaid. Herd responded that Republicans see Medicaid expansion “as a backdoor way to get to a single payer system.… Of course, the GOP in general has tight alliances with private health insurers who oppose these kinds of expansions.”

But there’s hope. Medicaid is still the law of the land, and both courts and career HHS officials are enforcing it, placing Utah’s attempt to undermine it in limbo. The Utah Health Policy Project has now collected thousands of comments from Utahns (and more recently from across the country, since what happens in Utah will set precedents for other states) in an effort to hold lawmakers accountable to the will of the voters. Most of the comments stick to either the principle of providing health care to the most vulnerable, the rejection of voters’ choice, or the preposterousness of the lawmakers’ choice to reject federal money. Occasionally, though, one can sense the fears emerging out of the anonymous voices. A therapist talks about patients who are “one bad night away from suicide” now facing new burdens of paperwork. A parent writes, “Medicaid enrollment limits tell my son his life is worthless and he might as well die because he is diabetic.” Another respondent worries that enrollment caps will “limit my ability to get my asthma treated and medications covered.”

People now receiving care for chronic conditions are terrified they will lose coverage. One writes, “Healthcare is a life or death situation for my family. As a working single mother I could not afford to pay out of pocket for coverage not to mention the rising cost of medications. I have no savings account, I have no wealthy relatives, I have no ability to borrow money from a person or institution, I have no assets. An arbitrary cutoff date shouldn’t be the reason a person lives or dies due to healthcare in any first world country.” Another sees Medicaid as a pathway toward stability, precisely the kind of process Republicans claim to want when they enact work requirements. The respondent writes, “I am a type 1 diabetic, and my SO has been struggling with complications from endometriosis. I am working toward an electrical engineering degree, and we both work hard to keep our heads above water; but we are always above these cut-offs financially. We want to work. We pay for what we use. We try to be responsible, but when I can’t afford my insulin, our lives are transformed into complete garbage. In engineering, you design with safety factors in mind—margin of error—so I hope designers of health policy would start doing so too.”

Stanford told me that for some people health care is coming too late. Her organization helps people sign up for Medicaid, and she says that one of her coworkers related a story in which someone committed suicide because they just couldn’t get the care they needed. Right now, the slow-moving expansion has locked out as many as 40,000 to 78,000 of health care. Across country, at least 15,000 people have died because their states didn’t expand Medicaid, according to a study out in July.

One lesson from Utah is clear: Voting for Medicaid expansion isn’t enough if you don’t also elect a government committed to providing health care to those who need it. Five more red states—South Dakota, Mississippi, Wyoming, Florida, and Missouri—have recently approved Medicaid expansion ballot initiatives for the 2020 election. Passing those initiatives matters, but it won’t be enough. We also need lawmakers who listen when the people speak.