Hamiltons holds press conference on impact of the Medicaid waiver waitlist

Yesterday (Oct. 15), State Rep. Carey Hamilton (D-Indianapolis) held a press conference to discuss the devastating impact of PathWays and Health and Wellness waiver waitlists under Indiana's managed care program, PathWays for Aging. Hamilton was joined by Dan Kenyon, the Executive Director of the Indiana Assisted Living Association (INALA) and her constituent, Jo Lynn Garing. Garing’s recently deceased grandmother, Josephine Malone, didn’t receive her waiver benefits in the transition to managed care and the waitlist put into place by FSSA. Josephine, a 103-year-old woman suffering from dementia and congestive heart failure, nearly had to move care facilities weeks before her death because she could not get off the waitlist.

“Yesterday, my constituent, Jo Lynn Garing, shared the heart-wrenching story of the stress her family endured simply to keep their sick, 103-year-old grandmother in the assisted living facility that fit her needs,” Hamilton said. “When Jo Lynn reached out to me this summer and explained what was happening with her grandmother, Josephine, I was in disbelief and frankly, ashamed that my state was abandoning Hoosiers who needed and had been promised care. I know that this story is not the only one of its kind. Hoosiers across the state are having their benefits stripped when nothing about their health status has changed.

“Formerly, FSSA had programs to cover at-home care for medically complex Hoosiers. This included elderly people who require daily assistance and children with severe disabilities. This also allowed elderly Hoosiers the freedom to access the care that best suited their needs, whether that was at home or in an assisted living facility. The absurd reality is that telling a Hoosier that they are on a waitlist for assisted living could mean they are transferred to more expensive care at a nursing home – a move that is more expensive for taxpayers and very likely harmful to that person.

“Hoosiers cannot wait years to receive the services they need to be happy, healthy, and age with dignity and comfort. With the 2025 budget session quickly approaching, we simply cannot let this issue fade into the background. We must keep calling attention to these stories to remind lawmakers that this must be addressed.”

“My Grandmother, Josephine Malone, worked hard her entire life, raising her daughter as a single mother and owning and operating a small business with her sister,” Garing said. “She was a true Rosie the Riveter during World War II, where she worked as a foreman in a factory making lenses for Navy ships. She worked until age 70, and lived independently until age 94 when she moved in with my mother.

“At the age of 102, our family decided that it was the best option to move into a memory care facility to keep her comfortable and cared for at the end of her life. We knew she’d have to privately pay with her savings, as she didn’t have any long-term care insurance and her small pension from her restaurant work and her social security wouldn’t even come close to covering the monthly cost of memory care. We chose a facility that felt more like a home and had a small number of residents to help ease grandma’s transition. Grandma’s savings went quickly, so in the Spring of this year, we began to look for another place for grandma that either accepted the Medicaid waiver or was a Medicaid nursing facility.

“That search brought us here to Bloom. We moved her to Bloom at the end of April and applied for Medicaid in May. Around that same time, FSSA instituted a waitlist for Medicaid waiver services. During the application process, we learned more about this waitlist, but we were unclear if Grandma would receive benefits or be placed on it. We thought her chances were high to receive benefits. She was 103, she had severe dementia and congestive heart failure, and she had been on hospice care since early 2024. She also applied for Medicaid right around the same time the waitlist was created. But unfortunately, she was denied full coverage because she lived in an assisted living memory care unit and placed on the waitlist.

“On October 3, Grandma peacefully passed away. Still on the waitlist for the Medicaid waiver.  Not once in all her years did she ask the government for assistance. Yet, at the end of her life, when all we wanted for her was to live out her days comfortably, she was let down by the state.” 

“As of now, over 13,000 Hoosiers are being told they have to wait for services they need in order to live with comfort and dignity,” Kenyon said. “This system has failed those 13,000 Hoosiers. The story we shared today can be heard from every corner of the state. These are fellow Hoosiers who have lived, worked, paid taxes, raised families and saved what they could for retirement. Only to have exhausted their funds simply due to living longer. These are folks who followed the rules, went through the system and trusted the state would meet its obligations. Every life is precious. We need to make the funds available now so our most vulnerable citizens can live out their days with dignity in a safe and caring environment.”