When getting a raise means losing health care: Disabled Iowans fighting back

By all rights, Sioux City resident Erica Carter should be a success story.

Despite a spinal cord injury 13 years ago—which left her unable to get out of bed without help—Carter was able to complete both a bachelor’s and master’s degree in accounting. Today, she is the finance manager at a public school and is active in her community, including helping with free tax prep services and at the domestic violence shelter.

But last November, Carter was kicked off of Medicaid for Employed People with Disabilities (MEPD), a state program that encourages folks with a disability to join the economy by allowing them to make a certain amount of money.

Disability advocates say that the program is out of date. Carter, and increasingly others like her, make too much money to get the cost of their care covered.

Without MEPD, Carter is now paying $500 or more per week entirely on her own—half of her income—because there are no options for home health care in the private insurance system.

So Carter’s options in Iowa are: Quit working and take a lower-paying job to get back on the home health care she needs or continue paying the exorbitant costs herself. The options amount to a financial ceiling for thousands of disabled Iowans like her.

“The misconception with people on Medicaid and receiving services is that they’re living in poverty, but there are people like me who get lost in the cracks,” Carter said. “I should be able to live and flourish and do everything I did prior to my accident.”

Iowans who ‘would love to work more’

A bill—an actual, bipartisan bill—is currently working its way through the Iowa Legislature that could help Carter and folks like her.

It’s House File 2589, otherwise known as the Work Without Worry bill. Among its provisions is one that would raise the income cap for the MEPD program from 250% of the federal poverty level to 450%.

For a household of one, 250% of the federal poverty line amounts to a salary of $36,450 per year; 450% would raise it to $65,610 per year. Here is the current federal poverty level by household size.

“The services are expensive, and so it becomes a balancing act,” said Catherine Johnson, executive director at Disability Rights Iowa. “There are quite a few people in Iowa that would love to work more, but to do so would be financially disadvantageous to them.”

With concerns about a workforce shortage, it’s also in Iowa’s best interest to fix the problem: Nationally, 19% of disabled Americans were employed in 2021. Yet that number was just 5.9% in Iowa.

“We want to work,” said Libby Schwers of Urbandale, who runs her own branding and design company. “We want to be financially stable, taxpaying citizens that can contribute to society. As of right now, these income limits are not allowing us to do so.”

It’s not just the physically disabled. Those with mental health challenges that require carefully calibrated medications, like librarian Rachel Bussan of West Des Moines, would also be positively impacted by the bill’s passage. Bussan doesn’t qualify for MEPD yet, but she understands the potential benefits of updating the program.

“It took me well over a decade to get employed, and I have a master’s degree,” she said. “[The bill] would reduce a lot of anxiety on my part that, if I lost employment, I would still have access to health care.”

Failure of policy

Their cause has found a champion in Rep. Josh Turek, a Democrat representing the Council Bluffs area who uses a wheelchair and won a gold medal for the US at the Paralympics.

“We have workforce issues in every single sector, and we have people that are ready to work, want to work, educated,” Turek told Starting Line. “And the only thing that is preventing them from work is policy because they have a fear of losing basic health care.

“Without their health care,” he added, “everything else is irrelevant.”

Quality of life

Another big provision: Disabled Iowans could actually marry without fear of losing MEPD.

Alex Watters, a Sioux City council member and alumni engagement director at Morningside University, recently found out he was “at the brink” of the income ceiling for MEPD. Besides not being able to accept any raises at his job, that also means he can’t marry his partner of four years.

“I like to think that I’ve been pretty successful advancing my career, and I have a lot to offer my spouse,” Watters said. “But we have to become impoverished if we want to become legally married.”

Besides raising the poverty limit, the bill in its current form would only look at income from the disabled individual—meaning both spouses could continue growing their careers and contributing to Iowa’s economy.

It also raises the asset limit, including allowing more than one vehicle, and adds a “right to repair” component that powered wheelchair users say has created too much red tape to fix their broken equipment.

Watters has spoken to legislators for years about Work Without Worry, and he and others said they were hopeful this would be the year they would see it pass.

“This is the first time I’m optimistic because it seems like there is bipartisan support,” he said. “That would give me faith that actual good things can come out of this elected body.”