Pleasantville, Iowa – Zach Mecum has heard Medicaid recipients demand politicians to work or lose profits. He also encountered a clutter of Medicaid rules that effectively prevent many people with disabilities from working full-time.
“Which one? Do you want to work for us?” he said.
Despite the disorder caused by muscular dystrophy, Mecham, 31, relies on a public insurance program to pay for services that will help him live on his own. He avoids using a wheelchair and breathes a portable ventilator.
Paid assistants stay at Mekham in the evening. Then, in the morning, a stay-at-home aide comes and he gets out of bed, goes to the bathroom, takes a shower, and gets dressed for work in his online marketing business. Without assistance, he said he would have to close the company and move to a nursing home.
He relies on Medicaid as private health insurance plans generally do not cover such support services. Medicaid is jointly funded by the federal and state governments, covering millions of Americans with low incomes and disabilities.
(Tony Leys/KFF Health News)
Like most other states, Iowa has a Medicaid “buy-in program.” This allows people with disabilities to participate in Medicaid, even if their income is usually a little higher than permitted. About two-thirds of such programs charge premiums, and in most cases there is a cap on how much money participants can earn and save.
Some states have raised or eliminated such financial caps for people with disabilities. Mecum has repeatedly travelled to the Iowa State Capitol, lobbying lawmakers and tracking those state leads. “A worry-free job” removes income and assets caps and instead requires disability Iowans to pay 6% of their income as premiums to stay in Medicaid. If participants pay a premium to employer-based health insurance, these fees will be waived and will help cover standard health care.
Disabled rights advocates say the income and assets caps for the Medicaid Buy-In program may prevent participants from working full-time or accepting promotions. “It’s a trap – a trap for poverty,” said Stephen Lieberman, policy director for the United Spinal Cord Association, which supports the change.
Lawmakers in Florida, Hawaii, Indiana, Indiana, Iowa, Maine, Maine, Mississippi, New Jersey and New Jersey introduced bills this year to address the issue, according to a national meeting of the state legislature.
Several other states have raised or eliminated program revenue and assets caps. The Iowa proposal is modelled on Tennessee’s law passed last year, said Josh Turek, Democrat representative for Council Bluffs. Turek, who promotes the Iowaville, used a wheelchair and won two gold medals as a member of the US Paralympic basketball team.
Advocates say allowing people with disabilities to make more money and obtaining Medicaid qualifications will help alleviate sustained workers shortages, including rural areas where working-age populations are shrinking.
Turek sees it as a good time to seek expanded employment rights for people with disabilities as they tout the value of Republicans who control the state and federal governments. “That’s the trumpet I’ve been playing,” he said with a smile.
The Iowa Legislature has moved to require that many undisabled Medicaid recipients be documented whether or not they can work. Opponents say most Medicaid recipients who can already work do so, and critics say they add red tapes that could lead to Medicaid recipients losing coverage on paperwork issues.
Iowa Gov. Kim Reynolds made Medicaid work requirements a priority this year. “If you can work, you should. That’s common sense and good policy,” the Republican governor told Congress in January in her “state of national speech.” “Bringing back to work can be a lifeline of stability and self-sufficiency.”
Her office did not respond to a KFF Health News query regarding whether Reynolds supports the elimination of income and asset caps for Iowa’s buy-in program, known as Medicaid for people with disabilities.
The spouse’s income counts in the CAP
National Disabled Rights Activists say the income and assets caps for the Medicaid Buy-In program may discourage couples from getting married or even pressure them to split up if one or both partners have a disability. This is because in many states, spouse income and assets are counted when determining eligibility.
For example, in Iowa, the monthly net profit cap is $3,138 per person and $4,259 for couples.
One of the Medicaid Dubuy Implants has an Iowa current asset cap of $12,000. For a couple, that cap is only $13,000. Counting assets include investments, bank accounts, and easy cash conversions, but not major homes, vehicles, or home furniture.
“There are couples who have been married for decades that we need to call “Medicaid divorces,” just to access these support and services that we can’t otherwise cover,” said Mariatown, president of the American Association of Disabled Persons.
The town said some states, including Massachusetts, have removed income caps for people with disabilities who want to participate in Medicaid. She said the cost of adding such people to the program is at least partially offset by the premiums they pay for the increased taxes they donate, as they are allowed to work more hours. “I think it has to be expensive,” she said for the state and federal governments.
Congress is considering a similar proposal that allows people with disabilities to work more hours without losing the benefits of a social security disability, but the bill has not progressed.
Most states have Medicaid Buy-In programs, but registrations are relatively low, said Alice Burns, a Medicaid analyst for a Health Information nonprofit that includes KFF Health News.
Barnes said that less than 200,000 people nationwide are eligible for options. “Awareness of these programs is really limited,” she says, and income restrictions and documents can discourage potential participants.
According to KFF analysis of 2022 data, with Medicaid Buy-In program fee insurance premiums, monthly fees range from 10 to 10% of a person’s income.
Remove the cap Iowa Building
Iowa’s proposal to remove income and assets caps has elicited bipartisan support from lawmakers, including a 20-0 approval slip from the House Health and Human Services Committee. “This is consistent with what the parties are aiming for,” said State Rep. Carter Nordman, a Republican who chaired the subcommittee meeting on the bill. Nordman supports the idea, but wanted to see an official estimate of how much it would cost the state to allow more people with disabilities to participate in the Medicaid Buy-In program.
Mecum, a lobbying civic activist for the Iowa bill, said he hopes he can expand his online marketing and graphic design business, “All deals at Zack.”
On a recent morning, Health Assistant Courtney Imler visited Mecum’s modest home in Pleasantville, a town of about 1,700 people in the agricultural area of central Iowa. Imler chatted with Mekam and lifted her from the wheelchair into the toilet using a hoist. She then cleaned him, polished his hair and helped him wear jeans and a John Deere T-shirt. She poured him a cup of coffee, put in a straw, he could drink it herself, wiped out the kitchen floor and wiped the counter. About an hour later, she said goodbye.
(Tony Leys/KFF Health News)
After cleaning and dressing, Mekham rolled his electric wheelchair onto his plain wooden desk, fired his computer and began working on social media videos for clients who promoted the book. He scrolled back and forth through footage of the interview she had done, allowing him to choose the perfect clip to post online. He also shoots videos, takes photos and writes advertising copies.
Mecum loves to feel productive and believes they can spend at least twice as much time as they don’t have the risk of losing Medicaid compensation. He said he was allowed to make a little more money than Iowa Medicaid standard limits. Because he ultimately signed up for a federal option that he hoped would go his way from paying for Social Security Disability.
There are several such options for people with disabilities, but they all come with complicated paperwork and frequent reporting, he said. “It’s such a complex system that I have to navigate to build all sorts of life for myself,” he said. Many people with disabilities are threatened by the rules, so they don’t apply, he said. “If you’re wrong, your life will lose the health care you are dependent on.”
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This article will first be published in KFF Health News and will be republished here under a Creative Commons license.
