Who deserves medical coverage, if they can’t afford to pay for it themselves? One of the Trump administration’s goals has been to sort recipients of Medicaid, the health coverage program for low-income people, into the deserving and the undeserving, by giving states permission to add work requirements to their Medicaid programs.
In March, U.S. District Judge James Boasberg rescinded that permission in Arkansas and Kentucky, calling the requirements “arbitrary and capricious” and unconnected to the purpose of Medicaid. Outside the reach of Boasberg’s ruling, however, the pursuit of work requirements—through applying to the Centers for Medicare and Medicaid Services (CMS) for what’s known as a Section 1115 demonstration waiver—continued.
“As for Utah, it didn’t seem to impact anything,” said Nate Crippes, a staff attorney with the Disability Law Center in Utah. “The day after the decisions from D.C., CMS approved work requirements in Utah’s waiver.”
Disability has not been a major part of the arguments about the work requirements. Medicaid is not, after all, officially a disability program. But Medicaid is a crucial part of the makeshift system that many disabled people rely on for health coverage—a solution for people whose lives and circumstances don’t always map neatly onto eligibility requirements for other programs, let alone onto simple notions like being willing or unwilling to work.
The attempt to make Medicaid requirements more restrictive, then, has made disabled people’s access to health care even more precarious than it was before—not because the waiver program is meant to target them, but because it doesn’t consider them at all. Boasberg’s ruling is a “glimmer of hope,” Alice Wong, the founder of the Disability Visibility Project, told me in a Twitter message. But she said she fears the issue will go all the way to the Supreme Court, where the conservative majority may be unsympathetic.
Even with Arkansas’s and Kentucky’s requirements set aside, seven states still have approval to impose them, and six more have waiver requests pending. If these states are ultimately allowed to impose these restrictive Medicaid work requirements, people with disabilities — who are often left out the conversation from the jump — will feel the pain.
“Being ‘on disability’ is such a misnomer,” Wong told me via email. “Medicaid work requirements will harm all kinds of people, including people with disabilities that do not fit under the exemptions.”
Having a disability, in this country, does not necessarily mean a person is covered by disability benefits. Emily, who spoke to me via email from rural New York state, is 22 years old and lives with epilepsy and migraines. Her epilepsy causes absence seizures—which make it dangerous for her to drive—while her migraines occur so frequently it’s difficult for her to work at all. Currently, she’s unemployed.
“I have absence seizures every day, and despite driving with absence seizures being perfectly legal, it is majorly unsafe and provides a huge obstacle in getting to work in a rural environment,” she said.
Emily is not, however, officially disabled. She is waiting for the Social Security Administration to rule on her disability status, a process that can take years. If the SSA finds her disabled, she can get access to disability benefits and to Medicare. At the moment, to get by, she relies instead on food stamps and Medicaid.
Under the Trump administration and widespread Republican control of state governments, Medicaid itself has become more forbidding and harder to access.
Medicaid has long provided a fallback for disabled people when other benefits programs are more difficult to navigate or slower to respond. But under the Trump administration and widespread Republican control of state governments, Medicaid itself has become more forbidding and harder to access.
Emily is fortunate to live in a state that, to this point, hasn’t applied to CMS for a Section 1115 demonstration waiver to impose work requirements. In Arkansas, before the requirements were lifted, 22 percent of the state’s Medicaid population had lost access to health care.
The political support for work requirements is based on the notion that undeserving people collect benefits out of laziness unless they’re forced to earn them. People who study health policy widely understand that this is devastating for the health outcomes of people in poverty, for whom already precarious living can turn disastrous if they can’t get access to care.
For people with disabilities, though, the question of medical care can be prior to the question of the ability to work at all, or just to get by. Medicaid work requirements can create an even more precarious situation for them, cutting them off from the care they need to manage ongoing conditions—and from the diagnoses they would need to successfully qualify for disability benefits.
“There are people with disabilities who are subject to Medicaid work requirements because they may not have an official diagnosis or documentation for their particular disability,” Wong wrote in an email. “These work requirements and other draconian measures such as Electronic Visit Verification (EVV) are designed to infringe upon our civil liberties and destabilize communities that are already living precariously in the margins.”
EVV systems use GPS and biometrics to track care given to people with disabilities and older Americans by personal care providers. Under a 2016 federal law called the 21st Century Cures Act, states are required to implement EVV for all Medicaid-paid personal care services by 2020 and for all home health care services by 2023. States that don’t comply risk losing out on federal Medicaid funding. Disability advocates oppose EVV systems because, among other things, the systems violate the privacy of people with disabilities.
In the United States, there are two programs that provide cash assistance to people with disabilities—Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). SSI is means-tested, which means to qualify one not only must be certified to be disabled (by a state agency or a judge, not by a doctor) in the eyes of the state, but must also meet certain asset and income limits. Those limits vary by state, but to receive SSI one must generally not make more than $750 per month, and must possess $2,000 or less in assets. That is to say, one must remain in poverty.
And because the Americans with Disabilities Act’s definition of disability is rather vague, not every person with a disability will gain access to SSI or SSDI. Under the ADA, an individual with a disability is “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment,” but the law notes it “does not specifically name all of the impairments that are covered.” Nearly six in ten nonelderly adults receiving Medicaid benefits report having a disability but do not receive cash assistance under disability programs.
“There are many people who are disabled, who have difficulties with a major activity of daily living, that fall out of the guidelines for benefits based on guidelines by an agency,” Wong said. “And depending on the program, the definition of disability may vary, whether it’s SSI or a state vocational rehabilitation program, for instance.”
This leaves a lot of people with disabilities—but who have not been certified as disabled by the state—in a vulnerable economic position. Because of their disability, they may not be working, and because of their particular state’s narrow definition of disability, they also may not qualify for cash assistance programs. And because they don’t qualify for those programs, they don’t automatically qualify for Medicaid. And because they may not be working, they might not be making enough money to pay for private insurance to cover their medical needs.
Navigating the bureaucracy just to get Medicaid on its own was “a frustrating nightmare,” said a 24-year-old man from Ohio who lives with multiple disabilities, including ADHD, OCD, and hypersomnolence, a condition that causes excessive tiredness and sleep, and who asked to be referred to as James Smith to protect his privacy. At the time he applied, he was living with his father—with whom he has a fractured relationship and who also has a disability—in a house owned by his uncle. The state determined that because he was under the age of 24 and living with a parent he could not file an independent Medicaid claim.
“From what I had understood by reading the forms, I should have been allowed to file independently as my father and I were not sharing income, and it was not his property, or by his hand that I was there,” Smith said.
Smith was eventually approved for Medicaid, but was then dropped from the rolls because of a failure on the part of the bureaucracy.
“Remember how I said they put me on my father’s file?” Smith said. “I guess they called back a bit later to ask why I wasn’t meeting the work requirement, except they called him and not me. He apparently didn’t think it pertinent to notify me. Needless to say, I was removed from the program shortly thereafter. I had received the medical card—which was, hilariously, literally just a piece of paper with my name, an ID number, and something like a barcode on it—at some point during all this, but I never actually got the chance to use it.”
Beyond the already difficult barriers to the Medicaid system, to meet work requirements a person has to be able to enter the workforce. And for people with disabilities, that demands more than the willingness to work and the existence of open jobs.
In the nearly three decades since the ADA was signed into law, people with disabilities still face unemployment rates that are significantly higher than non-disabled people. The discrepancy isn’t caused by one particular thing or another, but is rather systemic. The ADA forced schools and public spaces to become more accessible to people with disabilities, and it gave people with disabilities greater legal protection in employment—but it still hasn’t done much to change the minds of employers when it comes to hiring people with disabilities.
The ADA forced schools and public spaces to become more accessible to people with disabilities, and it gave people with disabilities greater legal protection in employment—but it still hasn’t done much to change the minds of employers when it comes to hiring people with disabilities.
A study by the National Bureau of Economic Research presented this in plain language:
“…a field experiment that sent applications in response to 6,016 advertised accounting positions from well-qualified fictional applicants, with one-third of cover letters disclosing that the applicant has a spinal cord injury, one-third disclosing the presence of Asperger’s Syndrome, and one-third not mentioning disability. These specific disabilities were chosen because they would not be expected to limit productivity in accounting, helping rule out productivity-based explanations for any differences in employer responses. Half of the resumes portrayed a novice accountant, and half portrayed an experienced one. The fictional applicants with disabilities received 26% fewer expressions of employer interest than those without disabilities, with little difference between the two types of disability.”
Against this background, the Medicaid work requirements present another trap for disabled people: the existence of the official disability exemptions strengthens the assumption among non-disabled people that people with disabilities can’t work. The rules make work a moral requirement for health care, and then exclude disabled people from it, casting the health care they get as unearned.
“Going to the Department of Transitional Assistance or any welfare office, there is a stigma,” a man from Massachusetts who has a trauma disorder and a PTSD diagnosis, and who preferred to remain anonymous, told me. “If I receive Medicaid it signals that I am not working and that there is something wrong with me. Or that’s how I perceive it. So when you take your Medicaid card and bring it to any provider, especially as a young person who appears to be able enough, you are dealing with the stigma of expectation.
“That stigma is heavy, as it leads to a sort of unsurety,” he said. “‘Do I need this? Could I be doing more? Should I be doing more?’ Some of my peers certainly think so, so this is something we don’t discuss. The one time it was brought up, I had a peer who was upset, because they worked but did not have insurance. So the stigma then becomes that I’m a grifter. At times, I feel like a grifter, but at times, I can’t get out of bed, and going outside is totally out of the question.”
Smith, whose experience with the CMS bureaucracy was ludicrous and ultimately futile, told me he thinks work requirements are patronizing.
“They imply that you don’t know how to help yourself, which is absurd because you can’t even apply without swallowing your pride and deliberately seeking out assistance and navigating through a bureaucratic maze,” Smith said. “Food and health care are supposed to be human rights. You shouldn’t have to work for your rights. They’re supposed to be granted. That’s why they are rights. That’s what rights are. So when they demand that you earn those things the subtext is that you are not human. Your life does not matter.”
Other factors like lack of access to education, affordable housing, and transportation—not to mention poverty, which begets deeper poverty—contribute to the employment gap for people with disabilities. People with disabilities often want to work, they’re just not always able to. They’re also not always desired by employers.
This is the deeper issue: How ableism creates a system that decided which people are disposable or valuable.
“It’s imperative that we have a conversation about the connection between employment and healthcare for people with disabilities,” Rebecca Cokley and Rebecca Vallas, who are, respectively, the director of the Disability Justice Initiative and the vice president of the Poverty to Prosperity Program for the Center for American Progress, wrote in an email. “We want them to work, but then at the same time we demand they remain poor in order to access health insurance. Also, these requirements do nothing about ensuring that employers will not discriminate against people with disabilities. A majority of the disability community wants to work, but even thirty years after the ADA, disabled Americans face inaccessibility, lack of access to public transportation—if they are unable to drive—employers who see them as an expense versus a contributor, and a risk that if they do gain meaningful employment and something happens causing them to lose their job, then they have to start back at square one fighting the bureaucracy to access Medicaid all over again.”
If being poor in America is expensive, then being poor and disabled in America is damn near impossible. And exhausting. Alice Wong summed it up: “I don’t think there’s a middle ground for now because of how disability is currently viewed by policymakers and institutions. Many people have a fundamental misunderstanding about the lived experience of disability. Disability isn’t binary, nor is disability the opposite of the ability to work. The question we should interrogate collectively is why productivity is considered acceptable by society. This is the deeper issue: How ableism creates a system that decided which people are disposable or valuable.”
The Trump administration has a penchant for making life more difficult for people with disabilities. In October 2017, Education Secretary Betsy DeVos rescinded 72 policy documents outlining the rights of students with disabilities under the Individuals with Disabilities Education Act and the Rehabilitation Act, a move congressman Robert C. Scott (D-VA) called “the latest in a series of disturbing actions taken by the Trump Administration to undermine civil rights for vulnerable Americans.” And before that, the Trump administration attempted to cap and cut Medicaid funding, which would have had a disproportionately negative effect on people with disabilities.
In states like Mississippi, which hasn’t expanded Medicaid under ACA, and which is among the poorest states in the country, Medicaid is already hard to get. If the federal government approves the state’s pending Section 1115 demonstration waiver, bringing on work requirements, qualifying will become even rarer.
“Who qualifies for Medicaid coverage in Mississippi is already very limited,” said Micah Dutro, the legal director at Disability Rights Mississippi. “If you’re an adult, you basically have to qualify for SSI or SSDI. And that’s pretty restrictive. Social Security is pretty tight on who they approve.”
SSI recipients, Dutro said, are “always living life on the razor’s edge. The benefit payments for SSI are so low that any change can be catastrophic.”
Dutro went on to say that, beyond the usual bureaucratic deterrents like confusing paperwork and wait times, the Mississippi Division of Medicaid is legally required to post changes to the benefits program on its website, in a state where many residents lack reliable internet service. According to a study published by the United States Census Bureau in 2016, just 70.7 percent of Mississippians have a broadband internet subscription—the number is significantly lower in the state’s more rural areas—making Mississippi the state with the lowest rate of broadband access.
In theory, 1115 demonstration waivers are supposed to be budget-neutral. Ideally, they’re meant to improve care or access to care. But Mississippi’s application claimed that the state would, by adding work requirements, save more than $30 million in the first year alone. How? By cutting out 58,995 member months.
“That’s not people, that’s how many months per person, all added up,” Dutro said. Over a five-year period of the waiver, the Mississippi state legislature estimated it would reduce coverage by 240,000 member months. “The only way you do that is by cutting people out of Medicaid,” Dutro said.
The situation in Utah is more complicated, or more perverse. In November of 2018, Utahns passed Proposition 3, a referendum that sought to expand Medicaid coverage to people under the age of 65 with incomes equal to or below 138 percent of the federal poverty line. Utah state senator Jake Anderegg, a Republican, opposed Proposition 3, and said, before the public would vote on it, “With the public vote, I don’t think that that’s sacrosanct.”
Proposition 3 would have expanded the Medicaid rolls in Utah to 150,000 people. Instead, just 90,000 people in Utah will be covered.
Many of Anderegg’s Republican colleagues agreed, and it didn’t take long for the legislature to reject the will of the voters—lawmakers voted in February of this year to replace Proposition 3 with a bill that only expands Medicaid coverage to people at or below 100 percent of the federal poverty line. Proposition 3 would have expanded the Medicaid rolls in Utah to 150,000 people. Instead, just 90,000 people in Utah will be covered.
“Plus, they added barriers of work requirements, capped funding, and are now seeking a per capita cap,” Crippes said.
If Proposition 3 had been allowed to take effect, Utah’s Section 1115 waiver wouldn’t have been in compliance with state code. Utahns acted with compassion when they voted to expand Medicaid and not put limitations on it. But the lawmakers who represent them acted callously, and now 60,000 people will suffer the very real consequences of austerity politics.
None of this comes as a particular shock. Republicans in the Utah state senate had made clear their disdain for the ballot measure before it even passed. Afterward, when he was voting to cut 60,000 people from eligibility, Andregg explained that Medicaid expansion was a step toward universal public healthcare. “As far as I’m concerned,” he said, “universal health care would be the worst thing that could possibly happen to us. Possibly. Ever. As far as health care goes.”