By Tony Leys, KFF Well being Information
PLEASANTVILLE, Iowa — Zach Mecham has heard politicians demand that Medicaid recipients work or lose their advantages. He additionally has run right into a jumble of Medicaid guidelines that successfully stop many individuals with disabilities from holding full-time jobs.
“Which is it? Do you want us to work or not?” he mentioned.
Mecham, 31, depends on the general public insurance coverage program to pay for providers that assist him stay on his personal regardless of a incapacity brought on by muscular dystrophy. He makes use of a wheelchair to get round and a transportable ventilator to breathe.
A paid assistant stays with Mecham at night time. Then a house well being aide comes within the morning to assist him get off the bed, go to the lavatory, bathe, and dress for work at his on-line advertising enterprise. With out the help, he must shutter his firm and transfer right into a nursing residence, he mentioned.
Non-public medical insurance plans typically don’t cowl such assist providers, so he depends on Medicaid, which is collectively financed by federal and state governments and covers thousands and thousands of Individuals who’ve low incomes or disabilities.
Like most different states, Iowa has a Medicaid “buy-in program,” which permits folks with disabilities to hitch Medicaid even when their incomes are a bit larger than would sometimes be permitted. About two-thirds of such applications cost premiums, and most have caps on how a lot cash members can earn and save.
Some states have raised or eradicated such monetary caps for folks with disabilities. Mecham has repeatedly traveled to the Iowa Capitol to foyer legislators to observe these states’ lead. The “Work Without Worry” invoice would take away revenue and asset caps and as an alternative require Iowans with disabilities to pay 6% of their incomes as premiums to stay in Medicaid. These charges could be waived if members pay premiums for employer-based medical insurance, which might assist cowl customary medical care.
Incapacity rights advocates say revenue and asset caps for Medicaid buy-in applications can stop members from working full time or accepting promotions. “It’s a trap — a poverty trap,” mentioned Stephen Lieberman, a coverage director for the United Spinal Affiliation, which helps the modifications.
Lawmakers in Florida, Hawaii, Indiana, Iowa, Maine, Mississippi, and New Jersey have launched payments to handle the problem this 12 months, in line with the Nationwide Convention of State Legislatures.
A number of different states have raised or eradicated their program’s revenue and asset caps. Iowa’s proposal is modeled on a Tennessee legislation handed final 12 months, mentioned Josh Turek, a Democratic state consultant from Council Bluffs. Turek, who’s selling the Iowa invoice, makes use of a wheelchair and earned two gold medals as a member of the U.S. Paralympics basketball workforce.
Proponents say permitting folks with disabilities to earn extra money and nonetheless qualify for Medicaid would assist ease persistent employee shortages, together with in rural areas the place the working-age inhabitants is shrinking.
Turek believes now is an effective time to hunt expanded employment rights for folks with disabilities, since Republicans who management the state and federal governments have been touting the worth of holding a job. “That’s the trumpet I’ve been blowing,” he mentioned with a smile.
The Iowa Legislature has been transferring to require many nondisabled Medicaid recipients to work or to doc why they will’t. Opponents say most Medicaid recipients who can work already accomplish that, and the critics say work necessities add purple tape that’s costly to manage and could lead on Medicaid recipients to lose their protection over paperwork points.
Iowa Gov. Kim Reynolds has made Medicaid work necessities a precedence this 12 months. “If you can work, you should. It’s common sense and good policy,” the Republican governor informed legislators in January in her “Condition of the State Address.” “Getting back to work can be a lifeline to stability and self-sufficiency.”
Her workplace didn’t reply to KFF Well being Information’ queries about whether or not Reynolds helps eliminating revenue and asset caps for Iowa’s buy-in program, referred to as Medicaid for Employed Folks with Disabilities.
Nationwide incapacity rights activists say revenue and asset caps on Medicaid buy-in applications discourage {couples} from marrying and even stress them to separate up if one or each companions have disabilities. That’s as a result of in lots of states a partner’s revenue and belongings are counted when figuring out eligibility.
In Iowa, for instance, the month-to-month web revenue cap is $3,138 for a single particular person and $4,259 for a pair.
Iowa’s present asset cap for a single particular person within the Medicaid buy-in plan is $12,000. For a pair, that cap rises solely to $13,000. Countable belongings embrace investments, financial institution accounts, and different issues that might be simply transformed to money, however not a major residence, car, or family furnishings.
“You have couples who have been married for decades who have to go through what we call a ‘Medicaid divorce,’ just to get access to these supports and services that cannot be covered in any other way,” mentioned Maria City, president of the American Affiliation of Folks with Disabilities.
City mentioned some states, together with Massachusetts, have eliminated revenue caps for folks with disabilities who need to be part of Medicaid. She mentioned the price of including such folks to this system is at the least partially offset by the premiums they pay for protection and the elevated taxes they contribute as a result of they’re allowed to work extra hours. “I don’t think it has to be expensive” for the state and federal governments, she mentioned.
Congress has thought of an analogous proposal to permit folks with disabilities to work extra hours with out shedding their Social Safety incapacity advantages, however that invoice has not superior.
Though most states have Medicaid buy-in applications, enrollment is comparatively low, mentioned Alice Burns, a Medicaid analyst at KFF, a well being info nonprofit that features KFF Well being Information.
Fewer than 200,000 folks nationwide are lined beneath the choices, Burns mentioned. “Awareness of these programs is really limited,” she mentioned, and the revenue limits and paperwork can dissuade potential members.
In states that cost premiums for Medicaid buy-in applications, month-to-month charges can vary from $10 to 10% of an individual’s revenue, in line with a KFF evaluation of 2022 knowledge.
The Iowa proposal to take away revenue and asset caps has drawn bipartisan backing from legislators, together with a 20-0 vote of approval from the Home Well being and Human Providers Committee. “This aligns with things both parties are aiming to do,” mentioned state Rep. Carter Nordman, a Republican who chaired a subcommittee assembly on the invoice. Nordman mentioned he helps the concept however needs to see an official estimate of how a lot it might value the state to let extra folks with disabilities take part within the Medicaid buy-in program.
Mecham, the citizen activist lobbying for the Iowa invoice, mentioned he hopes it permits him to increase his on-line advertising and graphic design enterprise, “Zach of All Trades.”
On a current morning, well being aide Courtnie Imler visited Mecham’s modest home in Pleasantville, a city of about 1,700 folks in an agricultural area of central Iowa. Imler chatted with Mecham whereas she used a hoist to raise him out of his wheelchair and onto the bathroom. Then she cleaned him up, brushed his hair, and helped him placed on denims and a John Deere T-shirt. She poured him a cup of espresso and put a straw in it so he might drink it on his personal, swept the kitchen flooring, and wiped the counters. After about an hour, she mentioned goodbye.

After getting cleaned up and dressed, Mecham rolled his motorized wheelchair over to his plain wood desk, fired up his laptop, and started engaged on a social media video for a shopper selling a e book. He scrolled forwards and backwards by way of footage of an interview she’d performed, so he might decide the perfect clip to put up on-line. He additionally shoots video, takes photographs, and writes promoting copy.
Mecham loves feeling productive, and he figures he might work at the least twice as many hours if not for the danger of shedding Medicaid protection. He mentioned he’s allowed to make a bit extra money than Iowa Medicaid’s customary restrict as a result of he signed up for a federal possibility beneath which he finally expects to work his approach off Social Safety incapacity funds.
There are a number of such choices for folks with disabilities, however all of them contain sophisticated paperwork and frequent studies, he mentioned. “This is such a convoluted system that I have to navigate to build any kind of life for myself,” he mentioned. Many individuals with disabilities are intimidated by the foundations, so that they don’t apply, he mentioned. “If you get it wrong, you lose the health care your life depends on.”
©2025 KFF Well being Information. Distributed by Tribune Content material Company, LLC.
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