About a year ago, I learned that my daughter was about to lose most of her coverage from California’s version of Medicaid, which pays for her care. “Uh-oh,” I breathed, looking up from the letter to lock eyes with her caregiver, who was spooning chili into Millie’s mouth. Henceforth, Millie would be assessed a share of cost—a sum equivalent to an insurance deductible of $21,000 per year. Thankfully, a kindly supervisor from the county health department offered a solution. If Millie joined the Working Disabled Program, she’d be exempt from these charges. Millie, who is 24, doesn’t walk independently. She has a sly sense of humor, but she doesn’t speak or sign. She makes beautiful abstract paintings if you guide her hand to the colors and make sure her fingers stroke the paper, not the table or her face. All I had to do was find her a job.
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Last month, the Trump Administration took a sledgehammer to federal funding. Though his order was blocked by a federal judge, I was shaken, just like all the other people in my community with disabled loved ones. But this wasn’t our first rodeo. In 2023, states dropped over 25 million Americans from Medicaid. Around the same time, House Republicans tried to push through legislation that would allow states to add work requirements to the program. House Majority Leader Steve Scalise explained his reasoning: “That single mom that’s working two or three jobs right now to make ends meet under this tough economy, she doesn’t want to have to pay for someone who’s sitting at home.” It was an oversimplification of the situation. It failed to account for the many people sitting at home not because they don’t want to work but because they can’t.
Now Medicaid work requirements may be coming back soon as part of a proposed $2.3 trillion spending cut to the program. Trump said he wouldn’t touch Medicaid but then endorsed a plan that included deep cuts. This does not bode well for Millie or so many others.
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When the issue was raised a few years ago, backers of the work requirements claimed that they would apply only to the “able-bodied.” Nevertheless, a substantial number of disabled people would have been affected. In 2020, 10 million Americans between the ages of 18 and 64 qualified for Medicaid on the basis of disability. The majority received Supplemental Security Income and were covered automatically. They met strict requirements when it came to their income and the severity of their disability. They are easily categorized as disabled and easily excluded from any work requirements that might come their way. But about 4 million did not qualify for this program, either because they were more mildly impaired or because they had income over the threshold. Some of these people made too much from paid employment. Others had too much retirement income. Still others, like Millie, who lost her dad when she was 3, received Social Security survivor benefits that pushed them over the edge. Whatever the case, they would not necessarily have an automatic exclusion from the work requirements.
We’ve seen a version of this before. In the heyday of welfare reform, the Clinton Administration signed the Ticket to Work and Work Incentives Improvement Act. California’s Working Disabled Program, which is authorized by this legislation, allows the disabled to “seek employment opportunities without fear of losing essential health care.” For the young man with Down Syndrome who bagged your groceries this morning, the program is a godsend: it triples the income limit so he can work without losing essential supports. The problem is that, for many people who rely on Medicaid but whose income is above a certain level, the Working Disabled Program is the only seamless option to avoid paying a share of the cost, even if they cannot actually work. The retired postal worker with Parkinson’s living on a small pension who will lose her home if her care isn’t covered. The college student on a ventilator living on survivor benefits who will have to drop out of school so she can pay for equipment and supplies. Millie, who only qualifies for survivor benefits because the state regards her as unable to work. What is the program telling them? That they can only be deserving if they make themselves useful. Why not simply exempt this income? Instead, the government is compelling Millie to do what she officially cannot do.
To be clear, we’re not talking large numbers. To receive no-cost Medicaid in California, a single person can’t have an income over $1,731 per month, less than you’d pay for a studio apartment in my city. Millie’s share of cost was calculated to leave her no more than the federal government thinks a single person needs to survive: $600 per month.
This might all seem like just another case of bureaucratic irrationality. But work requirements aren’t just absurd; they’re also cruel. Beginning with Ronald Reagan, politicians have sung odes to the dignity of work and blamed “handouts” for keeping people poor. Welfare reform has caused hardship for millions of people, people who can’t work because they have no money for childcare or transportation, don’t have a stable address, or simply can’t navigate the endless forms. Care isn’t a luxury when you can’t get a drink of water—or escape a fire—without assistance. Denying someone coverage may seem like a far cry from actual murder. But people die.
I only reached the kindly supervisor after nine hours on hold without anyone ever picking up. This was followed by three hours in a crowded waiting room, surrounded by people who couldn’t afford to be taking this much time off, before I finally met with a case worker who informed me that the letter wasn’t some sick mistake. When the supervisor later called, I was scouring the internet to see whether I could mount an appeal. The requirements for the Working Disabled Program weren’t onerous, it turned out. “Your work activity could be regularly picking up recyclable items to earn income,” the website said. But what about people like Millie who can’t do even that? I could buy her health insurance and deduct the premiums from her income. Otherwise, I seemed to have two choices: Go through the bureaucratic nightmare to prove that work requirements should not apply to her or figure out something she could do for income.
Of course, many disabled Americans want to work, and they do work: as doctors, artists, athletes, electricians, writers, and anthropologists. For decades, brave activists struggled for inclusion in a society so disabling that few disabled people could pursue a career. Accessible bathrooms, curb cuts, equal pay: these things were worth fighting for. But the problem was never “handouts”; it was disdain for disabled lives.
Now these achievements are under threat, as Diversity, Equity, Inclusion, and Accessibility (DEIA) programs are on the chopping block. But I’m not just advocating for disabled people; I’m worried about all the other Medicaid recipients who will be forced to prove their worth. Under the work requirements promoted by Republicans, some of these people might ultimately not be required to work to receive their benefits. But to exempt them, state legislators would need find them in the thicket of Medicaid programs and pathways, and the staff who know this landscape may soon be gone. Welfare reform was a bipartisan project. Reagan sang the song, but Clinton made it law. Democrats will soon be watching as an argument they’ve endorsed is taken to its logical, lethal conclusion.
Meanwhile, Millie is in the living room. She’s wearing leggings and leg braces, and her hair is cut in a pixie. She’s sitting in a slide rocker—her favorite chair. A friend is playing a passage from Bach on her cello. She has hired Millie as her cello-practice supervisor to fulfill the Working Disabled Program requirement. Millie leans forward and coos. When the piece is over, my friend scrapes her bow down the strings, and Millie howls with laughter. What Millie loves about music is the predictability but also the surprises. I’m learning to play the drums, and I’ve been practicing with Millie. I watch her face as she catches the rhythm. She concentrates as my sticks clatter, and a wave of pleasure passes over her features when I shift the beat. It makes me never want to stop.
Millie is rendering me a service. I’d be happy to pay her for it. But her usefulness isn’t the point. The point is her responsiveness, and my responsiveness to her. This is where life with my daughter has led me—to a new understanding of what people should value in one another. It’s time to stop hating the poor and disabled. It’s time to stop worshipping work.
