For 40 years, Herschel “Don” Moore worked as a truck driver. He raised a family, bought a home and at age 62 his wife Lisa Moore said he wishes he could stay in the workforce.
“He's worked his whole life. He's never been on benefits. He took care of his family,” Moore said. “He did what was required of him.”
Don suffers from Parkinsons, a neurodegenerative disease that over just two years destroyed his ability not only to work but to walk, feed himself, speak or use the bathroom independently.
In 2024, Don went on Medicaid. Moore said her husband had no choice.
“We were doing fine for about a year and a half until the beginning of this year,” she said. “That's when basically, to put it bluntly, all hell broke loose.”
The Indiana Family and Social Services Administration (FSSA) sent a letter to the Moore family saying that since it didn’t submit information requested in a February letter, Don was losing his benefits. Moore said she never received that request.
Their lives already revolved around his illness. Now, fighting the FSSA and paying for healthcare was a daily, existential struggle.
“With him being sick the way he is, we've moved in with our daughter,” Moore said. “We lost our home. I mean, we lost everything.”
Moore herself left work a few years ago on disability, but now she’s taking a new job. It was that, she said, or begin pawning their possessions.
Moore said she doesn’t mind working, but her husband requires round-the-clock care. If she and her daughter are both at work, Don will be all on his own.
“I can go find a job, that's not a problem,” Moore said. “But then, what do I do? Just leave him at home to die?”
National issue
The Moores are more than an unusual case of a family slipping through the cracks. All over Indiana (and the nation at large) thousands of disabled people are losing the benefits they relied on for survival.
Susan Jo Thomas, Executive Director at Covering Kids & Families of Indiana said, there is no one reason.
“I think there are lots of different compounding, interwoven pieces that have come to play: as they used to say, the perfect storm,” Thomas said. “They've all come to fruition at the same or close to the same time.”
President Trump’s signature second term statute, the One Big Beautiful Bill Act, included a 12 percent cut to Medicaid spending and tightened restrictions on nutritional assistance programs while requiring states to contribute more.
Executive orders by the President and Indiana Governor Mike Braun required applicants to report the immigration status of household members, even if they did not receive benefits. Thomas said that led many families with undocumented friends and relatives to stop applying. In 2026, state and federal legislation dramatically increased the frequency of Medicaid requirement checks.
Underlying it all is “Medicaid unwinding” – the end of continuous Medicaid coverage tied to the federal COVID Public Health Emergency.
Thomas said the state did what it could to keep people enrolled for a year after the emergency ended.
“During that four-and-a-half-year period of time, all the rules that were in place got set aside,” Thomas said. “We were able to get people on benefits with very little proof, very little documentation.”
But starting in 2025, FSSA employees had to reevaluate over 1.8 million Hoosiers receiving assistance. In one year, Medicaid enrollment dropped by 343,000.
During that period, patients who were previously satisfied with their state assistance reported delayed communications, case workers missing appointments and applications sitting unread.
Moore said despite visiting her local Division of Family Resources (DFR) office daily with thousands of pages of documentation, the FSSA allowed Don’s coverage to lapse for months.
“I said, ‘What do you mean I didn't comply?’” she said, recalling a recent visit to the office. “And there was one young lady in there that was giving me more information than she should have been giving me, and she told me that all of this paperwork right here was sitting in a queue, and nobody looked at it.”
FSSA Reaction
FSSA did not respond to WFIU/WTIU’s request for an interview, but it categorically denied that applications were being ignored.
“It is patently false, and we dispute the allegation that any of our employees are spreading that false information,” wrote an unidentified spokesperson. “The Family and Social Services Administration (FSSA) is committed to ensuring accurate and timely determinations for Hoosiers applying for Medicaid coverage.”
Nevertheless, Kari Nowlin, a team leader at the Aging and Disability Resource Center in Ellettsville, said she’d been hearing from a lot of her clients that “incompetence at the local DFR offices” has been the biggest obstacle to staying enrolled.
“They go into the local Medicaid office for help and they're turned away, or they go in and ask to speak to a supervisor and they're told there's no supervisor in the building,” Nowlin said. “I have assisted individuals who have come in with their documents that are time and date stamped when they took them into the local office, and then they have a letter saying that they no longer have Medicaid because they failed to provide those required documents.”
But Nowlin doesn’t blame the workers.
“I think that the DFR local offices are just severely understaffed,” she said.
Statistics appear to back up that perception. The growing burden of documentation has driven the surge in disenrollment, rather than changing criteria for eligibility.
As reported by the Indiana Capital Chronicle, between 36 and 40 percent of Medicaid cases up for renewal last fall were denied for procedural reasons – in other words, because the state reported lacking documentation – versus under nine percent who were ineligible. In June, less than 20 percent of recipients due for renewal kept their benefits.
Despite the growing workload, the federal government still requires all standard Medicaid applications to be processed within 45 days, and applications requiring a disability determination must be processed within 90.
The FSSA is attempting to respond. In April, it announced it was hiring 400 employees to assist with eligibility checks. Current job listings as of the date of publication show the agency is hiring eligibility consultants at 31 locations.
Children affected most
The effects of unwinding have been especially pronounced for children.
Indiana saw the largest percentage decline of child enrollment nationwide since January 2025, nearly 20 percent, according to a Georgetown University study. That’s 174,000 children, around half of Hoosiers who lost coverage. In total numbers it puts Indiana third in the nation behind California and Texas, both states with populations over 30 million, more than four times that of Indiana.
Some families have struggled to get their kids enrolled in the first place.
Kim Shepard and her husband James adopted two children with disabilities. Sawyer, a.k.a. Yaya, 7, is gregarious and energetic with a penchant for climbing. His older brother Trayan, 8, is pensive and prefers reading and editing videos on his tablet.
Both have to be fed through gastrostomy tubes, which cost around $115 per week for each of them. That’s before other medical expenses.
Shepard estimates childcare and healthcare together cost their household around $3,000 per month.
“There's definitely been times where my husband and I have skipped meals. I go without my meds pretty frequently,” Shepard said. “It's not ideal.”
Both of her sons have been on the Medicaid Family Supports Waiver waitlist since she adopted them several years ago. Shepard knew the process could take years given the limited number of spots, so she attempted to enroll them in traditional Medicaid.
Since her children were adopted out of state, the FSSA told Shepard their medical records weren’t acceptable. She would need to get them re-diagnosed in Indiana.
“They’re doctors forms, but Medicaid says that’s not relevant,” Shepard said. “In Indiana, most places have wait lists of at least six months to a year. That’s several thousand dollars.”
The FSSA also told Shepard that she and her husband made $400 per year too much to qualify for traditional Medicaid. They scheduled a phone appointment to discuss the issue, but Shepard said because it was her husband’s name listed and she had picked up, they canceled the call.
But those aren’t the only way issues with Medicaid are affecting the Shepard family.
Kim and James are therapists who work with Medicaid patients. Last year, the FSSA significantly lowered the amount of therapy it would cover for people with disabilities. Not only do the caps affect quality of care for their patients, but they also mean significant cuts in the Shepards’ household income.
“I'm going from seeing a client 20 hours a month to six hours a month,” Shepard said. “There's times where clients just lose their Medicaid randomly, and as a provider, you kind of have to make the ethical call of like, am I gonna see them and not get paid?”
She does her best to offset the lost hours by providing day habilitation (DHI), another service covered by Medicaid, but it’s a significant drop in pay – from $50 to $19 per hour.
“None of us count on having people to help us,” Shepard said. “We don't count on having money, but it'd be really nice if that changed.”
‘Back in black’
At 22 percent of the state budget, Medicaid is Indiana’s second largest expense after K-12 education. It’s become a huge target for fiscal hawks looking to rein in spending, including its own leader.
Mitch Roob, Secretary of FSSA, derisively referred to his own position as “Secretary of Socialism” at the August quarterly report, when he announced the program was “back in black after 18 long months.”
The administration returned $310 million to the Indiana general fund after long running a sizeable deficit. Roob said more frequent financial reviews, must-return mailers and restrictions on Applied Behavioral Therapy for children with autism closed the gap, as has encouraging elderly Hoosiers eligible for Medicare to pursue dual enrollment.
“Medicaid is a fiscal chronic disease, and we have to consistently manage it and stay on top of what we are doing,” Roob said.
He added that “waste, fraud and abuse are a truism in Medicaid,” and that the state would be cracking down on providers overcharging or “fictionalizing their care.” Indiana announced it will partner with the Centers for Medicare & Medicaid Services and the Oracle Corporation to use artificial intelligence to identify fraud.
That plus increasing eligibility checks for individuals may drive down the Medicaid rolls.
“Too many rotten apples in the Medicaid barrel are abusing the generosity of the state. We are aggressively pursuing efforts to remove them,” Roob said in April. “During the pandemic, federal rules limited our ability to disenroll ineligible members, and spending ballooned. Oversight was more difficult. We are correcting that now.”
Other changes likely to limit enrollment are around the bend. New work requirements for Medicaid will activate in 2027 requiring at least 80 hours a month of from recipients who don’t meet certain exemptions. Roob emphasized that it is the client’s responsibility to make sure they still meet the requirements and stay enrolled.
“It is not your doctor's job to keep you eligible. It is not the hospital's job to keep you eligible. It is not the health plan's job to keep you eligible,” Roob said. “It is not even FSSA's job to keep you eligible.”
But when disenrollment happens to eligible recipients, many wish they had more help from the FSSA to stay in the system. Many patients who are removed for procedural reasons are eventually reenrolled (a process known as “churning”) but Shepard said for vulnerable populations, temporarily losing coverage is not something they can afford.
“The state doesn't really seem to care about those sort of things,” she said. “They're just like, ‘Well, they lost their Medicaid. They can reapply. It will take three months.’ People don't have three months. They don't have a week without care.”
Moore said she understands the state’s concern and she appreciates that fraud is an issue, but she doesn’t think it excuses the hoops she’s had to jump through.
“People are ripping Medicaid off. Okay, I understand that,” she said. “But we're not one of them.”
Moore’s husband has since been reenrolled on Medicaid, but she said she’s still fighting the system to get back his home healthcare and diabetes and Parkinson’s medications.
“I hear a lot of people say, ‘You know, I'm not taking it personal.’ Well, I am taking it personal,” Moore said. “This is not only frustrating. This is his dignity.”
