Employed Iowans with disabilities cannot have more than $12,000 in available resources or earn more than 250% of the federal poverty line – $37,650 per year for one person — if they wish to keep their government-funded health care.
Zachary Mecham of Pleasantville said that is frustrating for him. “If I don’t have my benefits, I can’t get out of bed in the morning,” he said. “I can’t get my ventilator, which I rely on to breathe. So I literally, as a person with disabilities, have to choose between breathing and getting a full-time job.”
According to Mecham, Medicaid’s income and asset limits make it difficult to become financially independent. “The majority of Iowans with disabilities want to work, yet a disproportionate number of us are either unemployed or underemployed, and we’d like to change that,” he told reporters. Erica Carter-Hoffman said she lost Medicaid coverage after receiving a promotion and raise. She said she paid $34,000 for home healthcare services last year so she could go to work every day.
Unfortunately, Medicare and private insurance companies don’t cover home-and community-based services like the home healthcare aides who help many disabled people live independently. The only way to get coverage for these services is through Medicaid.
Libby Schwers, a self-employed graphic designer with a rare neuromuscular disease, recently announced her engagement. “Becoming engaged to someone is normally a completely joyous time in anyone’s life, and it shouldn’t be a time to worry about potential marriage penalties from Medicaid,” she told Iowa Public Radio. “It’s unjust that disabled Iowans like myself are having to choose between employment, marriage and health care when nondisabled folks are automatically granted all three options.”
Sometimes, the antiquated rules keep people from working at all. Stephen Gruzlovic of Robbinsville, NJ has cerebral palsy. He was forced to quit his job as a roadside assistance manager in 2017 because he made too much money to continue receiving Medicaid. In 2023, Gruzlovic expressed disappointment that he relied on SNAP benefits and Section 8 housing to help pay his bills.
Unfortunately, millions of disabled Americans are in the same situation including me. At 25, I have spent the last seven years trying to figure out how to work and retain MassHealth, which is the state Medicaid program in Massachusetts. As someone with cerebral palsy, I rely on MassHealth because it pays for my PCAs (personal care assistants.) Even though I am able to work, it wouldn’t be possible without MassHealth.
I hire PCAs to assist me with showering, toileting, and getting dressed, among other things. I also rely on my PCAs to assist me with transportation. Without my PCAs, employment would be impossible.
Without MassHealth, my annual out-of-pocket healthcare costs would exceed $50,000. No job would pay enough for me to afford PCA services out of pocket. I’d go bankrupt trying to survive.
Disabled Americans should be able to work full-time and save for a home, their children’s education, emergencies, or retirement. They should not lose Medicaid coverage. Disabled people want to work, but bureaucracy often makes it challenging.
Sources:
Livio, Susan K. “Disabled People Want to Work, and Murphy Signed a Law to Help Them. Why Are State Officials Holding It Up?” NJ.com Advance Publications, 16 Feb. 2023, http://www.nj.com/politics/2022/08/disabled-people-want-to-work-and-murphy-signed-a-law-to-help-them-why-are-state-officials-holding-it-up.html?outputType=amp. DLrwMkFZ4LovFDDWokEDXSN5qdX6LwdCd85JZbF0gQkswCdVv1LpVA.
Sostaric, Katarina. “Iowans with Disabilities Call for Medicaid Changes so They Can Advance Their Careers.” Iowa Public Radio, NPR, 31 Jan. 2025, www.iowapublicradio.org/state-government-news/2025-01-31/iowans-with-disabilities-call-for-medicaid-changes-so-they-can-advance-their-careers.