FSSA exploring narrow relief options for Hoosiers on Medicaid waitlists

Indiana Medicaid Director Cora Steinmetz responds to lawmaker questions at a Medicaid Oversight Committee on Aug. 27, 2024. (Whitney Downard/Indiana Capital Chronicle)

Responding to pressure, state officials are considering whether or not they can tap into a pool of federal dollars to provide relief for a narrow subset of Hoosiers on Medicaid waiver waitlists.

Indiana Medicaid Director Cora Steinmetz described the process during a two-hour Medicaid Oversight Committee Tuesday alongside updates on various Medicaid initiatives.

A combined 13,678 Hoosiers were on either the PathWays Waiver or the Health and Wellness Waiver waitlist as of last week, though numbers fluctuate day to day. Currently the agency is working to invite 925 Hoosiers off of waitlists to enroll in services each month — 800 from the PathWays waiting list and 125 off of health and wellness.

Steinmetz explained that waitlist enrollees must meet the financial eligibility criteria — which is higher than the financial cutoff for standard Medicaid coverage — and require “nursing facility level of care,” meaning they need assistance with daily living activities such as eating, bathing or dressing.

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

To qualify for Medicaid coverage — whether through the waiver or health insurance coverage — individuals often “spend down” their assets. But lawmakers in both political parties expressed concerns about someone on the waitlist who had already spent down their assets and was living in an assisted living facility with no relief in sight.

“What happens if that individual qualifies, they’ve paid down their assets and now the family is beginning to have to draw down their assets … what’s the solution there? Because everything would have been in place for that individual to go forward but now they fall in this gap,” said Sen. David Niezgodski, D-South Bend.

Steinmetz said the administration is looking at ways to improve the waitlist process by working with providers but also exploring whether it could direct unobligated federal funds to “bridge the gap.”

“It’s really these individuals that we know have experienced challenges who might be over income for traditional Medicaid and need that special waiver to qualify and are waiting for this invitation,” Steinmetz said. “In those circumstances, we’re working closely with the assisted living provider association to find some temporary financial resources …”

Steinmetz couldn’t say precisely how much money FSSA had left in American Rescue Plan Act dollars, which had spending guardrails. But said a portion of the dollars was earmarked for home and community-based services.

“That particular pool is what we’re looking to use to assist those individuals who are in the assisted living facilities and are in that spend down situation,” Steinmetz told lawmakers. “… we’ve identified the source of the funds and are just finalizing sort of the process and application format … for that particular funding pool.”

FSSA launched a waitlist dashboard earlier this month but one of the complaints from Hoosiers on the waitlist is not knowing when they can expect an invitation to enroll in services.

“We hope to continue to be able to give people a better idea of where they are on the waiver waiting list so that they have an idea and their families can plan,” Steinmetz said. “Because we certainly appreciate that it’s a challenging situation to be in.”

The number of Hoosiers who would be impacted by the assistance is unknown.

In a joint statement with Indiana Families United 4 Care, disability advocates with The Arc of Indiana flagged ongoing waitlist problems, including Hoosiers on other waiver waitlists.

“Indiana now has over 20,000 people on Medicaid Waiver waiting lists. These are people who require the level of care provided in a skilled nursing facility or institution for people with developmental disabilities. While the state plans to bring people off waiting lists each month, waiting lists will continue to grow as new people will continue to apply for services each month,” The Arc of Indiana CEO Kim Dodson said in a statement.

“The Arc is extremely concerned that these individuals are not receiving critical services needed to live safely at home and in their communities, and families providing care are increasingly stressed and overwhelmed as they try to provide the care and support needed for their loved ones.”

Other Medicaid Updates

Implementing the waitlist was one of several “cost containment strategies” FSSA implemented following the news of a $1 billion Medicaid shortfall in December. Legislation earlier this year required that the agency provide monthly reports to prevent future errors, though Medicaid expenses are difficult to predict .

Another cost-saving measure was addressing growing attendant care costs for just over 1,600 medically fragile children. The program didn’t have caps on state payments to parents and some families claimed over 60 hours of care and received over $100,000 in reimbursement.

Most families, 70%, moved from attendant care, which pays an hourly rate, to structured family caregiving, which pays a per diem rate.

Tendra Duff, a mom to twin boys with several health complications, urged the committee to provide relief to families who previously used attendant care. Families have said that attendant care paid a living wage and that the reimbursement under structured family caregiving is too low.

She noted that two of the children whose families rallied at the Statehouse earlier this year have died, demonstrating how little time some of these children had.

“A lot of these families are struggling to get the care that these kiddos need, to get them to appointments and to get them to therapies. Because they don’t have the financial means to be able to do that anymore,” Duff said. “Time is of the essence. As we’re talking about this, many of our families and many of our children don’t have that time.”

Families were the best option to care for these children, especially those with little time, Duff said.

They should “be able to do that in a stress-free set of mind where their focus can be on their children, not how they’re going to pay groceries,” she concluded.

Jennifer Dewitt, a parent with Indiana Families United 4 Care, said that a survey of 170 families with medically fragile children transitioning off of attendant care revealed gaps in available services.

“For many waiver families, the care they’re providing is above nursing facility level of care, but rather hospital setting level of care. Without their work caring for loved ones, their waiver recipient would be forced into a hospital which would result in an even more dire financial position for them and the state of Indiana,” Dewitt said in a statement.

Just 5.5% of families said they were able to secure full staffing from outside caregivers, according to The Arc.

While this small group of children have high health costs, most of the state’s coverage for minors is on the low end of expenditures. Instead, the higher cost populations are older Hoosiers in need of expensive health care services such as nursing homes.

Steinmetz shared that while older Hoosiers make up 7% of enrollment, they account for 15% of expenditures.

Sen. Travis Holdman, R-Markle, observed that policymakers have little recourse for reducing overall costs, which are tied to overall high health care costs. Others agreed on the need for more long-term planning.

“Most of what we’ve talked about seems to be pretty reactive to what has already happened,” said Sen. Ed Charbonneau, R-Valparaiso. “… as we move forward, are you beginning to look at what are the things that we can do, should do?”

Steinmetz pointed to the updated forecasting methodology and better coordination with the Legislative Services Agency as improvements to the agency.

“… it’s really going to give us a picture of what we think state fiscal year (20)26, (20)27 and beyond is going to look like to help inform the policy decisions of what we will be able to do,” Steinmetz said. “Input from other states is especially helpful because the challenges that we are experiencing are not unique to Indiana.

“… A lot of states are discussing, ‘How do we ensure sustainability for our program?’ So I think we can really leverage partners in other Medicaid agencies across the country to help inform that as well.”

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