INDIANAPOLIS — Josephine Peters' family didn't expect the battle they would have to fight in order to get a Medicaid waiver.
"We moved her to Bloom (at Kessler Senior Living in Indianapolis) at the end of April and applied for Medicaid in May. Around that same time, the FSSA instituted the waitlist for Medicaid waiver services," said Peters' granddaughter, Jo Lynn Garing.
Peters was among more than 13,000 Hoosiers on that waitlist.
On July 1, the Indiana Family and Social Services Administration implemented changes to its waiver program after an unanticipated $1 billion shortfall to its Medicaid budget.
"What we were told was that because she lived here in an assisted memory care unit, she would not receive long-term care benefits until she moved to a nursing home," Garing said.
That created financial concerns, not only on the family, but for the assisted living and memory care facility where she stayed.
Peters was diagnosed with dementia and congestive heart failure.
She died at the age of 103 on Oct. 3 while still on a Medicare waiver waitlist.
"Grandma worked hard her entire life," Garing said.
The daughter of Lebanese immigrants, she worked as a foreman in a factory making lenses for U.S. Navy ships during World War II.
As a single mom, Peters raised her daughter while running a tavern she owned with her sister and later working as a hostess, all in Peoria, Illinois.
"She finally retired in 1991 at the age of 70, and she continued to live on her own in a modest home in Peoria until she was 94," Garing said. "Incredibly, she was independent until her 90s."
In early 2024, Peters entered hospice care.
Garing's frustration with FSSA led her to seek help from Rep. Carey Hamilton (D-District 87) to advocate on her behalf.
"It's our job as the legislature to solve this problem now," Hamilton said.
Hamilton said she encourages the State Budget Committee to work with the State Budget Agency to come up with a solution.
"I did talk directly with leadership at FSSA about this particular situation and got no real answers. There's a waitlist. Eligibility is coming, but there's this waitlist. Why? Because there's a waitlist. It's a frustrating circular conversation," Hamilton said.
Another concern leaders have is they worry places like Bloom could close due to a lack in reimbursement costs.
"A lot of providers like Bloom here have said, 'OK, we'll just take what can be paid. and of course they're losing money. That can't continue forever," said Dan Kenyon, executive director of the Indiana Assisted Living Association.
"We must keep calling attention to this so that my colleagues in the legislature understand that this is a dire urgent need for us to address when we go back in January," Hamilton said.
It's in hopes of helping the more than 13,000 Hoosiers on the waitlist, waiting for help.
"When she needed assistance from the government at the end of her life, the state of Indiana let her down," Garing said.