“No man’s land:” Hoosiers on Medicaid waitlist seek answers

James “Jim” Densmore, left, with his sister and caretaker Sarah Densmore. Both are seeking answers about Jim Densmore’s place on the state’s waitlist for Medicaid waiver services. (Photo provided by Sarah Densmore,. Photo illustration by Whitney Downard/Indiana Capital Chronicle)

Prior to May of 2021, James “Jim” Densmore lived alone and worked a full-time remote job in central Indiana as a quality systems data analyst. But when he stopped answering his phone, his family started to worry.

“We found him on the floor. Amazingly, he was understanding my commands, my questions and hearing me. And when I asked him, ‘Did you have a stroke?’ He gave me a thumbs up,” Sarah Densmore, his sister, recalled. 

After weeks in a hospital followed by months of rehabilitation, Jim Densmore moved in with his sister, his closest family, who had relocated to a ground floor apartment to better accommodate his wheelchair. And while he no longer has a feeding or tracheostomy tube, he’s still partially paralyzed on his left side. 

“He is just now learning to stand on his own after three years, but he is still progressing. He couldn’t do that six months ago,” Sarah Densmore said. “It just made sense that I would be the person. So I gladly brought him in and — with the help of many, many wonderful at-home agencies and his regular doctor — he’s been getting gradually better.”

But the coverage options that got Jim Densmore, now 64, and Sarah Densmore, 63, through the first year or so didn’t last. His company’s short-term disability policy lasted six months, but Jim Densmore couldn’t return to work and lost that insurance. Then he made do with Medicaid, which lapsed once he started getting his social security because his income level was too high, Sarah Densmore said. 

Now Jim Densmore uses that social security to pay out-of-pocket premiums for insurance under the Affordable Care Act Marketplace while Sarah Densmore — who also retired to care for her brother — uses her social security to cover their basic living needs. 

FSSA implements waitlist for Aged and Disabled Waiver services

Then the Densmores found out about the state’s Medicaid waiver programs and applied in November 2023. It would not only cover some medical expenses but could also pay Sarah Densmore a daily stipend as Jim Densmore’s caregiver. 

But the following month, the overseeing agency revealed a nearly $1 billion shortfall in the state’s Medicaid budget. One of the maneuvers used to save the state money was the implementation of a waitlist for waiver services, which have a higher income cutoff than traditional Medicaid. 

“We don’t have enough money for food throughout the month, so thank heaven for these wonderful people at local food pantries because they help me stretch the food budget. Gratefully, I can pay for our rent, our electricity and he can pay for his phone bill, his insurance premium, the therapy …,” Sarah Densmore said. “We’re very fortunate in that regard. But at the end of the month, there is absolutely nothing left.”

Shortly after an interview with the Indiana Capital Chronicle, Jim Densmore, who was on the Aged and Disabled waitlist, got a message from FSSA inviting him to move to the PathWays waitlist.

The state split the Aged and Disabled waiver into a PathWays waiver, for older Hoosiers, and a Health and Wellness waiver for those with disabilities. Starting in July, the state transitioned those under the old waiver waitlist onto new waivers, both of which also have waitlists.

The Densmores plan to start the PathWays process this week, but it is unclear how long it will be before he can get services.

There are many more people like Jim Densmore. Under the current process, if no new Hoosiers join the waitlists — an unlikely scenario — FSSA would process the PathWays waitlist in just over 11 months while the Health and Wellness waiver would take two and a half years. 

Impact of budget on waitlist

Indiana has five different Medicaid waivers, at least two of which have a waitlist. Four of the waivers are administered by the Bureau of Disability Services and focus on serving Hoosiers with disabilities while the remaining waiver for PathWays — for Hoosiers aged 60 and older — is overseen by the Office of Medicaid and Planning. 

The estimated length of each waitlist varies depending on capacity, but some officials warn that some waitlists already exceed the number of available slots. The Family and Social Services Administration only shared information related to waitlists for the PathWays and Health and Wellness waiver.

The agency didn’t respond to a question about whether there were waitlists for either the Family Supports Waiver, the Community Integration and Habilitation Waiver, or the Traumatic Brain Injury Waiver — though disability advocates said there are waiting lists for the Family Supports waiver as well.

According to a July 1 release, 9,015 Hoosiers are on the waitlist for PathWays and another 3,762 are on the waitlist for the Health and Wellness Waiver. FSSA invited 125 people off of the Health and Wellness waitlist and 800 people off of the PathWays waiting list in July and intends to do the same in August. 

“The pace that has been shared is based on making sure that the state’s systems and processes could handle the capacity and to provide transparency. We will monitor the work closely,” an FSSA spokesperson said. “We are currently working through just over 900 members each month and will continue to look for ways to increase the throughput.”

Though the federal government has approved more slots for Indiana than it currently fills, FSSA isn’t utilizing those additional slots. The state’s PathWays waiver notes that “The State’s budget process drives the number of annually available waiver slots.” 

FSSA told the Indiana Capital Chronicle, “All FSSA programs and waivers are dependent on the funding available” when asked about the impact of the budget on the waitlist.

But state lawmakers have indicated little appetite for more Medicaid spending, instead sharing concerns about the program’s ballooning costs. Legislators will convene in January for the next budget writing session.

Few options for Hoosiers on waitlists

Staff with The Arc of Indiana, which advocates on behalf of Hoosiers with disabilities, flagged concerns about whether people would be forced to seek institutional care in the absence of the community supports the waivers provided.

“… being on a waiting list not only can delay critical medical treatment and therapies, but also means critical supports to help individuals remain in the community are not available,” The Arc of Indiana email said. “These lack of supports can lead families to seek placement in a Medicaid funded group home, nursing facility or placement for extended periods of time in psychiatric wards of hospitals. Family caregivers may feel forced to quit working, which puts the entire family at risk because they cannot pay their bills. Down the road, this will impact their social security and other retirement income.”

The Arc’s spokesperson said several family advocates with the organization had called 211, the state’s informational hotline, to see what resources it would recommend for families on the waitlist. 

“While the 211 operators were very sympathetic, there was very little they could direct them to … Without Medicaid or a Medicaid Waiver, there is no substitute to cover attendant care or structured family caregiving. It is crushing for families to be told, “there are other services out there” when there are not,” the email said. 

Frequently, families are directed to their local Area Agency on Aging or the state’s Bureau of Disability Services. Sarah Densmore said she’d received a call from the latter last week, after being directed to contact them by her local Area Agency on Aging. 

She was dismayed to learn that FSSA prioritizes those who’ve recently left institutional settings on the waitlist and that the state can’t give specific wait time estimates. 

An excerpt from the state’s PathWays waiver application.

“What I still find perplexing is that (FSSA) could not tell me where Jim is on the waitlist and how many people are in front of them? (They) said they don’t know, they have not been told,” Sarah Densmore said. “I said, ‘Well, surely someone must know. It’s computerized … that doesn’t seem logical to me.’”

“When I call (others) and they say, ‘You’re number five, please hold. Your estimated wait time is seven minutes,’” Sarah Densmore continued. “Why can’t (FSSA) do the same thing? I just don’t understand it.”

In an email, an FSSA spokesperson said that those estimates couldn’t be calculated “because of the factors involved, such as whether a person invited off the waitlist declines to continue the process and the number of individuals who are given waitlist priority in any given month.”

“When an individual is invited to continue the process of joining the waiver, they will receive multiple notifications outlining the specific steps they must take and the timeframe in which they must be completed,” the email continued. 

The Arc notes that the state maintains a centralized waitlist for the Family Supports Waiver but that local Areas Agencies on Aging have the lists for PathWays, Health and Wellness and Traumatic Brain Injury waivers. 

“It is very difficult to navigate. This is information that is vital for people to have,” The Arc spokesperson said. “Right now, (families) are in no man’s land and really feel adrift.”