This story was originally published by the Indiana Capital Chronicle.
By Whitney Downard
Indiana Capital Chronicle
April 2, 2025
Nine-year-old Jackson Moore has Angelman syndrome, a condition that delays his development. His mother, Amanda Moore, said her child is nonverbal and has frequent seizures, symptoms that are more manageable with therapy and medication.
But she worries all of his progress could be jeopardized if he loses his Medicaid coverage.
“Our fear is that any sort of these cuts could impact his medications, it could impact the therapies that you need,” said Moore, a Hamilton County resident. “… if it was left to be covered by private insurance or families? That’s a crisis. Our private insurance covers six therapy sessions a year. He gets five a week in order to give him the quality of life he deserves.
“So the fear of any of that going away? It’s a terrible thought.”
Moore is the CEO of the national Angelman Syndrome Foundation, pushing at the state and federal levels to protect Medicaid from potential changes that could disrupt coverage for the millions of Hoosiers enrolled in the government insurance program. She, along with roughly 200 others from all over the state, gathered at the Indiana Statehouse on Tuesday to protect Medicaid — many explicitly targeting Senate Bill 2, a proposal that would establish work requirements for some beneficiaries.
Still, Moore was quick to note Jackson’s happy nature and preschool-like wonder, feeling “infuriated” whenever someone suggests that Medicaid’s services should be limited in a way that might exclude her son.
Moore wouldn’t be impacted by Senate Bill 2 directly, since Jackson is covered by another Medicaid program, but she and others worry that provisions like quarterly checks could carry over.
“Managing my son’s complex needs is already a full-time job. Now, imagine asking families like mine to complete repetitive and confusing paperwork just to maintain the basic needs he deserves,” Moore told the rally crowd. “This is not only wrong, this is dangerous … Indiana already faces serious gaps when we care for individuals with disabilities. Removing access to Medicaid will only widen that gap and it will cost lives.”
Senate Bill 2 primarily focuses on the Healthy Indiana Plan, which covers moderate-to-low-income Hoosiers. As currently written, the bill has nearly a dozen exceptions to work requirements for HIP enrollees, such as caregiving, having a disability or volunteering.
But advocates like Tracey Hutchings-Goetz, an organizer and policy director with Hoosier Action, predict that as many as 150,000 Hoosiers could lose their HIP coverage if work requirements were established. If work requirements were implemented nationwide, some estimate 5 million adults could lose their coverage.
Providers like Allison Case, a physician with HealthNet in Indianapolis, shared her concerns about implementing a barrier for her patients, many of whom are HIP members at the federally qualified health center.
“The majority of these patients have jobs but still struggle to make ends meet … these are people who are often one setback away from a major crisis,” said Case.
She described a patient, dubbed “Mary,” who had a job but needed HIP to get treatment for her diabetes, chronic obstructive pulmonary disease and depression. She briefly lost her coverage and Case reported losing touch with her, meaning Mary didn’t get her needed health care.
“Finally, months later, we were able to get a hold of her … (but) she’d had multiple trips to the ER. She had run out of her medications,” Case said. “She had been in the hospital with life-threatening hyperglycemia, which would have been prevented if she had had her insulin.”
Being so sick made Mary miss work and Mary worried that she’d lose her job, according to Case.
“This is one example of what happens when people lose their Medicaid coverage: they get sicker,” Case said. “They can lose their jobs; they can lose their housing …
“It costs the state more money when people are sicker and use the hospitals as a primary care clinic, rather than clinics like mine and it stresses an overwhelmed health care system. SB 2 will result in more people like Mary suffering,” Case continued.
Cuts to Medicaid could also have a disproportionate impact on the state’s rural hospitals, which cover populations that are more likely to rely on the government insurance program.
Case and others rallying to protect Medicaid pointed to the bill’s fiscal note, which projects that work requirements and quarterly eligibility checks will cost the state money because of the additional administrative workload. Additionally, the federal government funds 90% of HIP — and the state uses provider and cigarette taxes to pay for the remaining 10%.
But that funding mechanism could also be threatened, part of the bill author’s stated motivation to revisit the program. On the federal level, the current budget includes cuts that would impact the $880 billion spent on Medicaid, with a particular target on Medicaid expansion populations like HIP enrollees.
Indiana Capital Chronicle is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Indiana Capital Chronicle maintains editorial independence. Contact Editor Niki Kelly for questions: info@indianacapitalchronicle.com.
