Indiana ended Medicaid waiver waitlists before. As thousands wait, could it do it again?

Gerald Williams was a truck driver living in central Indiana. In 2017, he was diagnosed with kidney failure and last year developed cancer. His wife, Dora Williams, filled out an application last year for him to receive home- and community-based services through what are called Medicaid waivers. But, they were told they would have to wait.

“It started nine months ago and it didn’t stop,” Dora Williams said.

Dora Williams sits at her dining room table, where she spent nearly four hours each day, on paperwork and phone calls trying to navigate getting services through the Pathways waiver. That was on top of being Gerald Williams’s full-time caregiver.

“I used to talk to my brother about a lot of stuff, and he said, ‘Well, you know what you can do?’ I said ‘What?’ [He said] ‘Get up in the morning. And just visualize you going to work.’ So it became like a job,” Dora Williams said.

The last time someone reached out to talk about Gerald Williams’s care was in early December.

But, Gerald Williams had already died in late November at the age of 67.

Dora Williams said her husband never received waiver services from the state, despite being told he was invited off the waitlist months prior.

“I was tired, and I was frustrated,” Dora Williams said. “I was getting the run around — so many different people talking and don’t knowing what they doing.”

FSSA declined to comment on the case.

Gerald Williams was one of more than 10,000 of Hoosiers placed on a waitlist for services. This isn’t the first time Indiana has implemented a waitlist for these services. In fact, advocates warn this could be the return to a decades-long wait for services — and that wait is already having a human cost.

Dora Williams is not the only person to have lost a loved one while waiting for services. FSSA has received criticism from advocates, families and lawmakers. However, the future of the Medicaid waiver waitlist doesn’t just involve the agency — it may come down to what state lawmakers choose to do this legislative session.

How did Indiana get here?

FSSA implemented the waitlist that delayed Gerald Williams’s care early last year.

It was one of the agency’s many strategies in response to the $1 billion forecasting error announced in December 2023.

Around the time Gerald Williams was first placed on the waitlist, in February, then-Indiana Medicaid Director Cora Steinmetz spoke about the cost-cutting strategies for the first time publicly.

“The reason that the strategies related to sustainability primarily focus on this waiver is because this is where we saw the greatest amount of unexpected increase in expenditures,” Steinmetz said.

At the time, the Health and Wellness waiver and the Pathways waiver were just one waiver — the Aged and Disabled waiver. These waivers separated in July.

One of the significant changes for people waiting for services through the Pathways waiver was that the waiver would be handled by the same insurers that were handling the Pathways for Aging program.

Once the state ran out of slots, people on the waitlist would have to wait for a slot to open or for a new one to be added. However, once a slot is filled it is considered filled for the entire fiscal year, meaning the earliest people could be invited off the list was in July.

This also means that if slots were to run out this year, the next time a slot would be available, new or reopened, would be in July.

Steinmetz said there were already nearly 13,000 people on the waitlist when those slots opened. She did warn that it would take time to actually get people off the waitlist, even with slots now available.

“This is not an overnight event to move people off of the waiting list,” Steinmetz said at a news conference in July. “We are required to conduct face to face assessments to determine an individual’s functional care needs, and to determine Medicaid financial eligibility for the program.”

The separation of the waivers in July added another complicated factor to the process for people applying for the Pathways waiver.

Dora Williams said when she first joined the waitlist she was working with her local Area Agency on Aging for case management. After not hearing anything for months, in May, Dora said FSSA had her fill out more forms. In July, case management was taken over by the Pathways for Aging insurers.

Dora Williams said her local Area Agency on Aging was no longer involved. It wasn’t just a conversation between them and the state. It was a conversation between them, the state and their Pathways insurer.

Dora Williams said she was stuck in a cycle.

“Back and forth,” Dora Williams said. “Every day I’m doing something, talking to people.”

Dora Williams said that loop kept going for months. She said they had very little information about what was going on or where they were on the list.

Then, she said she received mail from FSSA asking if Gerald Williams would like to be invited off the waitlist. They responded yes.

Once her husband was invited off the waitlist, Dora Williams said she felt like the process was wasting her time. She said people would visit her home and ask her the same questions over and over.

“I think it was something like, ‘Maybe, we should do this to let them think that they are getting ready to be off the wait list, but they really are not,’” Dora Williams said. “I rather for you to just tell me, don’t keep coming to my house, having me fill out paperwork. Just say, ‘You’re going to be on a waitlist again, another three months.'”

In the meantime, Gerald Williams still needed daily help with care tasks like bathing, making food and moving around the house.

By November, Steinmetz said there may not be enough waiver slots available for everyone.

“We do anticipate within this waiver year that there will be a point where, depending again on the uptake of those slots, we could run out of actual slots to even invite individuals until we get to July 1 of next year and it’s the new waiver year,” Steinmetz said.

As of January, there are still more than 10,000 Hoosiers stuck on waitlists for the Health and Wellness and Pathways waivers.

How did Indiana eliminate its previous waitlists?

Advocates say it felt like Indiana went back in time overnight.

Kim Dodson, the CEO of the Arc of Indiana, said these programs had started during the 1980s. By the 1990s, Dodson said the demand for these services grew beyond how much Indiana had to offer.

“Families really at that time were just learning about the opportunities available for people out in, out in the community, so all of that kind of came together to kind of create that perfect storm of a long waiting list,” Dodson said.

Dodson said Indiana had a 20,000-person waitlist during the 1990s and early 2000s, and that wait could last up to 20 years. She said the state’s records weren’t accurate and it was easy to lose track of paperwork, so the waitlist grew.

“Once somebody signed up, they were forever on the waiting list unless they contacted their local office to change an address, to let them know that the loved one had passed away, moved out of state, etc,” Dodson said.

To eliminate that waitlist, Dodson said the agency sent a postcard to families to ask if they were still interested in receiving services. Families that did not return the postcard were removed from the waitlist.

“Mail is not always the most dependable and reliable form of communication, so unfortunately, I think we did remove people from a waiting list that shouldn’t have been removed,” Dodson said.

While FSSA was able to eliminate the first waitlist, advocates don’t want the agency to approach this one the same way. Dodson said Indiana needs to keep in contact with families much more than they have in the past.

“What I do think that the state needs to do is continually to reach out to those on the waiting list to say, ‘We still have you on the waiting list. This is your date of application. Has anything changed in your life?’” Dodson said.

Dodson said finding a solution to the current waitlist will likely involve state lawmakers.

“We need to turn to our legislature,” Dodson said. “Our legislature is in every single community across the state. I think we need to make sure that every legislator knows at least one family that Medicaid impacts.”

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The number of slots available is determined by the state budget. State lawmakers determine how much money they want to dedicate to Medicaid and how many slots they want to make available. Dodson said that’s why it’s so important for advocates and people affected by the issue to communicate with lawmakers.

“The legislature is not a scary place,” Dodson said. “They are human beings. They, you know, should not be expected to be an expert in Medicaid. People are experts in their own lives. Use this as an opportunity to educate a legislator about your life.”

However, advocates are up against lawmakers that don’t want to increase Medicaid funding, meaning that waitlist might not be resolved this year.

“There are many legislators who do not want Medicaid to outspend education in our state budget, so I am not overly optimistic and receiving more dollars to reduce the waiting list,” Dodson said.

Dodson said the other component is making sure the state has the resources to actually move people off the waitlist. She said Indiana currently has slots available that aren’t being filled because of how long it’s taking the state to process people.

Both of those factors, the number of slots and how they get filled, determine people’s access to services. Dodson said the human impact of this waitlist will likely continue to grow the longer people don’t have access to the services they need.

Human cost of the budget issue

Already, families are feeling the loss of delayed care. Back in her home, Dora Williams is grieving.

Boxes of dialysis equipment are stacked on a dolly across from the bed. There’s still a sticky note on the dining room table that Dora Williams wrote reminding her to reach out to FSSA. Gerald Williams’s walker is stored in a room with his Chicago Bears memorabilia. There’s a picture of them on their wedding day in 1997 next to the bedroom door.

In addition to the loss of her husband, Dora Williams is also grieving the time she lost with him trying to navigate getting him services.

“He just started to decline and that’s not to say that wasn’t going to happen, even if I would have had the program, he still was declining,” Dora Williams said. “But it was just hard knowing that he’s declining, he could have probably felt a little better.”

It’s only been a few months since she lost her husband, but in that time, she has found something she wants to do with her frustration.

“I was like, ‘God, why am I going through this?'” Dora Williams said. “And then I would think, ‘Well, maybe it was to help somebody else.'”

Dora Williams said she can’t help but think of the people who don’t have someone to advocate for them.

“Think about it: Suppose a 78-year-old woman by herself, she can’t do what I did,” Dora Williams said. “She’s not going to make it physically. If she didn’t have nobody to help her, she would not be able to get on that program because all the stuff they wanted you to fax, all the calls, being on hold.”

In addition to the delay in care, Dora Williams highlighted the need for more training and people to act as advocates for others on the waitlist.

“Give me a job to train people how to care,” Dora Williams said. “I just don’t understand what the world has come to. People just don’t care no more.”

Dora Williams said she hopes to use her experience to become an advocate, but she hopes no one else has to lose their loved one.

“It happened and it shouldn’t happen again,” Dora Williams said. “Never. Whatever happens out here in this world, it shouldn’t happen to another person again.”

The Indiana legislature will determine the state budget for the next two years during this year’s legislative session.

Abigail is our health reporter. Contact them at [email protected].