As Parkinson’s takes its toll, Indy man worries his Medicaid will never come

INDIANAPOLIS (MIRROR INDY) — Tom Ketchum didn’t leave his living room chair for two days.

The 79-year-old with Parkinson’s disease sat while the TV flickered, staring off into space. After the latest argument with his estranged wife, no one was there to help him shower or go to the bathroom. He didn’t even try to get up for food.

“It wasn’t managing or surviving,” Ketchum said. “It was just existing.”

But his wife came back to their Indianapolis home after two days because they couldn’t afford to separate — not in Indiana.

“I need to be here because he cannot be alone,” Patty Ketchum said. “He cannot go any place because Medicaid doesn’t want to help.”

Just as they ran out of money to pay for Tom Ketchum’s adult day care, state officials were grappling with their own grave financial situation: a nearly $1 billion Medicaid shortfall. To save money, the state’s Family and Social Services Administration created a waitlist for Medicaid waivers — including the program Ketchum needs to join to afford a spot in a long-term care facility.

He’s waited for six months in a deteriorating body and strained marriage.

“I need help now,” Ketchum said. “Right now. Not when some government agency decides.”

He is still waiting.

At Still Waters Adult Day Center near Castleton, patients play bingo and listen to the hits of their generation.

On Aug. 20, it was “Lucy in the Sky With Diamonds.” One woman danced with her cane and a baby doll, swaying back and forth. Her name is somewhere on a set of lockers in the hall.

This is where Ketchum goes every week. His wife can drop him off before she heads to work. “It’s a great respite,” he said, from living at home with Parkinson’s, a degenerative disease that makes movement difficult. Ketchum needs help standing up, getting dressed and eating.

There’s just one problem: without Medicaid, he can’t afford adult day care.

“I’m on a scholarship,” Ketchum said. “I’m here three days a week. The other days I fend for myself at home.”

Still Waters director Diana Keely pooled the money to help Ketchum and other patients who are on the waitlist for the PathWays waiver, a re-designed Medicaid program for Hoosiers 60 and older. It was previously called the Aged and Disabled Waiver, and then split into two: PathWays for senior Hoosiers, and the Health and Wellness waiver for people 59 and younger living with disabilities.

The waivers pay for community-based and home services, including assisted living, home care, adult day care, meal delivery and transportation to doctor’s appointments.

But trouble began when Indiana met its capacity to pay for the waivers in April 2024 and instituted a waitlist. It continued on July 1, when the state transferred management of the PathWays waiver to three major health insurance companies.

People who were already in the program were automatically transitioned to the new waiver. People like Ketchum who signed up in the months before the transition were placed on a waitlist; when they get off is determined by their financial and medical situation, as well as how fast the state frees up slots.

“The roll out was so poorly run, (the insurance companies) don’t have staffing, everyone on this waiver can’t get a hold of anyone,” Keely told Mirror Indy. “The billing process isn’t in place and we aren’t getting reimbursed.”

In the meantime, elderly Hoosiers are languishing without vital services.

“The state needs to release more funds to get people off the waitlist,” Keely said. “Someone needs to step in quick to help our seniors who can’t help themselves.”

More than 39,000 slots in the PathWays waiver are already filled, according to FSSA, and the state is transferring people off the waitlist each month to fill about 10,500 remaining spots. About 800 people were transferred off the list in both July and August — a rate that would take more than a year to serve everyone waiting.

A FSSA spokesperson said state Medicaid funding determines the number of slots available.

In the meantime, people like Ketchum are caught in the limbo of budget troubles and bureaucracy. His care plan is relying on the generosity of others.

“I’m at my wife’s mercy,” he said. “I have no idea how I’d get to Still Waters because I can’t drive anymore.”

The caregiving has taken a toll on her.

“I need to take him to Still Waters, go to work, come back and get him, and come home to cook and keep the house working,” Patty Ketchum said. “With all this pressure and stress, I am going to be very sick soon.”

Some people are a step ahead of Ketchum and off the waitlist. But that doesn’t mean they’re getting the services they need.

Angela Yates, 61, takes care of her mother, Shirley, who has dementia and attends Still Waters Adult Day Center. The family was approved for the PathWays waiver, but they said they have struggled to get answers from Humana, who started managing their care after the state’s transition.

“My biggest issue is I haven’t been contacted by anyone,” Yates said. “You’re supposed to have a care coordinator. My mom’s incontinence products, which she desperately needs, stopped being delivered. Then I found out Still Waters isn’t getting paid.”

Without the day care program, Yates will have to quit her job to become a full-time caregiver for her mother.

She described facing several obstacles when she tried to get answers on the phone. First she called the PathWays hotline, who sent her to FSSA. FSSA said to call the billing department. Billing said to call Humana. No one seemed to have any answers.

A spokesperson for FSSA said the agency is monitoring the rollout and working with providers to resolve the problems quickly.

But Yates couldn’t afford to wait. She started buying her mother’s incontinence products out of pocket and met with Still Waters about the situation. Keely, the director, allowed the family to use the day center, even without Medicaid reimbursement.

Yates was grateful. “I’m not even sure how mom’s bill is being paid right now,” she said.

With Keely’s help, she hounded Humana about a care coordinator until one was assigned. But Yates hasn’t found them to be responsive.

A spokesperson for Humana said the company’s care coordinators have reached out to all 10,000 waiver members since July.

“This right here is mental anguish,” Yates said. “Being on the phone for hours and doing all this back and forth, it just takes a toll on you.”

Yates isn’t alone. The Arc of Indiana, a nonprofit that advocates for people with intellectual and developmental disabilities, has heard from hundreds of families confused and frustrated by the Medicaid changes.

“This does put people in danger,” said Karly Sciortino-Poulter, the organization’s advocacy director. “The state is relying on families to step in without considering the financial toll.”

Two weeks ago, alone at home, Tom Ketchum fell.

He got up without a walker and lost his balance. He was sprawled between the living room and the dining room, his cell phone out of reach. Lying there, he wondered who he would even call.

An hour passed by on the floor. His wife Patty was working late. No one was coming soon, so he crawled toward a piece of furniture and used it to pull himself up.

When Ketchum finally reached the phone, he didn’t ring the fire department. Instead, he called the woman he’d been married to for 15 years.

Patty Ketchum came home and cleaned his wounds, wiping up the blood on the floor.

“Lord knows I thank her a hundred times a day for what she does for me, because she doesn’t want to be here,” Ketchum said, still wearing his bandage. “She knows if she walks out, she has no idea what would happen to me.”

He took a deep breath.

“And, frankly, neither do I.”