The Problem with “Able-Bodied”

When the Centers for Medicare and Medicaid Services (CMS) announced on January 11 that they will now allow states to implement work requirements for Medicaid recipients, they made a point of saying those requirements could only apply to “able-bodied adults”—in fact, they put it in the headline of their press release. The problem is, the government defines “able-bodied” differently than most of the rest of us would. To the average person, it might sound like this policy only allows states to require healthy, strapping folks to work, but the reality is quite different.

There are a lot of reasons why attaching a work requirement to Medicaid eligibility is a bad idea. It adds to the administrative burden for both states and beneficiaries, now that people will have to prove they’re already working or are exempt from the requirement. Some people will be forced to take minimum wage jobs that don’t offer health benefits so they can meet the work requirement—and then will end up uninsured anyway because they’ll be making too much money to remain eligible for Medicaid but not enough to purchase their own coverage. Not to mention that a work requirement, even for healthy, strapping folks, runs counter to the mission of Medicaid, which is to provide equal access to healthcare—and good health—for people who would not otherwise be able to afford it—period, full stop.

But one of the very troubling aspects of this policy, and of how CMS is communicating about it, is the impact it will have on people with disabilities, despite reassurances from CMS that it only applies to people who are “non-disabled.”

“Able-bodied” probably doesn’t mean what you think it means.

According to a June 2017 poll by the Kaiser Family Foundation, 70% of Americans are in favor of allowing states to require non-disabled adults to work as a condition of receiving Medicaid. (In contrast, only 12% want to reduce funding for Medicaid, indicating that the overwhelming majority of people support Medicaid generally.) But do we understand how the government actually defines disability?

Make no mistake, unless something happens to stop it, Medicaid work requirements will be implemented in some states. Nine states have already submitted their requests to do so; one of them, Kentucky, was approved on January 12, the day after the CMS guidance was released.

Imagine a person who regularly has migraines so severe that they mimic strokes and leave her temporarily unable to walk or speak. She also experiences frequent seizures. She has to avoid fluorescent lighting. Computer screens can also be a problem. She needs help with driving and other routine tasks. Her chronic conditions render her incapacitated three or four days a week.

Would you consider this person disabled? I would.

The federal government does not.

The person I described is real. Her name is Allyson Wendt, and she is a 38-year-old freelance writer, editor and, out of necessity these days, also an activist on behalf of the chronically ill and disabled.

In 2016, Allyson was working 10 to 15 hours a week as the Marketing Director for a small nonprofit farm-to-school organization in Vermont. She loved her work, plus the position offered her a lot of flexibility and allowed her to work from home sometimes, which was great for her as the mother of two young children. Then the migraines and seizures started, and Allyson had to go on medical leave from and ultimately quit her job.

Eventually she was diagnosed with PTSD stemming from a sexual assault. Her hemiplegic migraines and psychogenic non-epileptic seizures, which she still experiences, are directly linked to her PTSD and are exacerbated by stress. Allyson also has rheumatoid arthritis and major depressive disorder.

“In other words, I’m a mess,” she said to me, laughing, when we spoke by phone not long after CMS released its guidance on Medicaid work requirements. Allyson laughs a lot, despite all the stressors in her life—she and her husband are also in the midst of divorcing. But she also does some late-night crying. “Some days I feel like super woman and other days I feel like I’m drowning in it all.”

Thanks to her Medicaid coverage, Allyson has been able to get treatment and her health has improved since her initial diagnosis. Without insurance, her medications alone would cost her $7000 a month. Plus she sees a therapist for her PTSD and depression, as well as a neurologist—she’s fortunate, she said, to have a really good care team. Today, she is down from six seizures a day to about one a week. Still, three to four days a week she is too sick to work.

“No one would ever hire me. I would be the most unreliable employee on the planet,” she said. “I have good days and then I have really bad days.”

Having learned all this, I was surprised when Allyson told me that her application for Social Security Disability Insurance (SSDI) has been denied not once but twice. She’s now preparing for a hearing to have the decision reviewed.

This matters in light of the CMS guidance because many states use an SSDI determination of disability status as the standard for whether a person is considered disabled for purposes of other state-administered programs, such as Temporary Assistance for Needy Families (TANF). In its guidance, CMS encourages states to align Medicaid work requirements with those for other programs, including TANF. That means in some states “non-disabled adults” could very well include people whose chronic conditions prevent them from holding a traditional job—people, for example, like Allyson.

To be clear, because she lives in Vermont, Allyson isn’t too worried that her state will implement a work requirement for Medicaid recipients, and she’s probably right. (“We have a Republican governor,” she said, “but he’s basically a Democrat.”) But her experience helps us understand what individuals living in states that do implement a work requirement can expect.

And make no mistake, unless something happens to stop it, work requirements will be implemented in some states. Nine states have already submitted their requests to do so; one of them, Kentucky, was approved on January 12, the day after the CMS guidance was released.

“Being a patient became my job.”

These days Allyson works from home, providing writing, editing and content marketing services to small businesses. She also makes hand-sewn fabric items that she sells in her Etsy shop, Warp Weft Fiber Arts. But right after she got sick, she was spending all of her time tracking down insurance pre-authorizations, finding the best doctors, and researching her conditions and possible treatments.

“Being a patient became my job,” she said, “which meant my identity was as a patient. It wasn’t great for my mental health.”

She also had to prove to the state of Vermont that she was disabled so she could get a deferment of the TANF work requirement. Vermont doesn’t rely on an SSDI determination but rather does its own assessment of whether an applicant is disabled. Under any circumstance, however, proving you are disabled can be a fairly difficult task. Allyson said Vermont’s process for assessing disability was “set up to make you give up.” She credits her caseworker with helping her successfully navigate the process and ultimately get a partial deferment of the work requirement based on her multiple diagnoses.

The SSDI process for determining disability is even more challenging. It’s common for a person’s initial application to be denied, forcing them to file for reconsideration, which is often denied as well. That has created a backlog of applicants waiting for full hearings so they can appeal their determinations. Right now, there are over a million people across the country waiting for hearings—the average wait is 600 days, with some people waiting more than two years. And when all is said and done, only about 45% of those who apply for SSDI benefits actually get them.

Patients whose disabilities stem from mental illness are in an even more precarious position. Allyson said that while it was a relief when she finally got a diagnosis because it allowed her to focus on getting treatment, it was hard finding out that her seizures were psychogenic, that is, that they were psychological not neurological in origin.

“The powers that be don’t take mental illness as seriously as physical illness,” she said, even when the mental illness has severe physical manifestations like her migraines and seizures.

We’re being misled about what this guidance means.

It all adds up to this: If a state imposes a Medicaid work requirement that relies on an SSDI determination for those seeking an exemption based on disability, then anyone whose ability to work is significantly limited by chronic illness will get caught up in a bureaucratic process for months or even years, which will delay their access to care and endanger their health or even their lives. Plus, many people who could not reasonably be considered able to work a traditional job will be told they aren’t actually disabled, at least by government standards, and will be kicked off the rolls if and when they can’t meet the work requirement.

Close to 90% of Americans oppose cuts to Medicaid funding. Given that, and regardless of what the statistics say, it’s hard for me to believe that 70% of Americans actually support this policy. I can only suppose that this number is due at least in part to people’s assumption that “able-bodied” means the same thing to the government as it means to them—and I suspect that most people’s understanding of the term is not that different from mine.

But when CMS uses “able-bodied” in the context of this policy, there’s an invisible asterisk beside it. We need to start printing that asterisk in bold, and we need to add a note to the American public: These words don’t mean the same thing to the government as they mean to you.

If you’re lucky enough not to have to worry about the implications of this policy for yourself or anyone you love, remember this: There are people in our country living every day with not only the constant stress of chronic illness but also, as Allyson put it, “the stress of an administration that is consistently trying to take away my healthcare.”

Think about that.

Then speak out. Share the facts. Change the minds of the people around you and encourage them to change the minds of the people around them. It’s only when we change how we talk about things at the dinner table, by the water cooler, at after-school pickup, that we can hope to change the conversation in the halls of government.