Concerns Rise for Disabled Americans as New Medicaid Rules Take Effect

Jonah Jacobs requires thousands of dollars’ worth of equipment to carry out basic life functions. He has Duchenne muscular dystrophy and uses a wheelchair since he was 16. His current wheelchair needs repairs, including new tires and replacing a snapped-off mud flap, which would cost $1,300.

He also needs a specialized lift to get in and out of bed, onto and off the toilet, and onto the floor for physical therapy. The one he has is falling apart, but a new one costs $5,000. He takes numerous medications, including heart medications and drugs to mitigate the effects of his muscular dystrophy.

“If I don’t remember to take certain medicines, it can kill me,” he said. “I have to take extra steps to eat, go to the toilet, take a nap, even down to, like, playing card games or video games, I have to have special help.”

Jacobs lives with his parents and relies on Medicaid for care. His mother, Pam, provides around-the-clock care and uses Medicaid as well. “We don’t know if we’re going to pay rent next month. We don’t know if I’m going to pay the phone bill when it’s due again. We don’t know any of that because once it stops, it’s going to take everything,” she said.

Pam and Jacobs have been waiting since December for Medicaid approval for wheelchair repairs or replacement, a new lift, routine medications, and physical therapy. On July 1, new Medicaid work requirements took effect as part of an effort to rein in the program’s rapidly growing costs.

Arc of Indiana's Kim Dodson said those fears are widespread among people with disabilities. She said her organization gets about 100 calls per week from people asking for help, and since January, about 75% involve Medicaid redeterminations, eligibility, and related issues.

“We’re not even going to have enough staff, potentially, to get people through the process of being found eligible for services and re-eligible for services, and approving paperwork for medical devices and other things,” Dodson said.

FSSA officials sent a written statement in response to questions. “Indiana Medicaid serves over 2 million Hoosiers, most with complicated needs, and while we cannot comment on a specific case, due to HIPAA, we are constantly seeking ways to improve our services and supports.”

Jonah said if he and his parents lose Medicaid coverage, they would lose their apartment. “If they deny this, I’m going to die and I don’t want that. I’m not ready to go yet,” he said.

Pam supplements their income by selling homemade craft items and will continue fighting to keep Jonah on Medicaid. “I will risk going to jail. I will get in your face, but what can I do?” she said.

Dodson advised those using Medicaid to follow up regularly with the FSSA about claims and to always make sure paperwork is properly filled out whenever submitted.