Proposed FSSA change for personal attendants of medically complex children spurs rally

Three-year-old Archer Ruzic was born with an incredibly rare, critical and incurable medical condition. His complex medical issues and 27 different diagnoses — including seizures, multiple heart surgeries and immune deficiencies — related to Kabuki Syndrome means he needs around-the-clock skilled care.

With a shortage of nurses available statewide, his parents — Jesse and Olivia Ruzic — had to step up. 

“I had to work because we did not have any child care for Archer, specifically. There was no nursing (care available) and so I worked full time in my field,” Olivia Ruzic said, holding back tears. “We were only a one-income household with two kids and it was extremely hard. We lived in a two bedroom apartment and we had to sell our house to move there and Archer actually slept in a walk-in closet.”

For two years, Jesse Ruzic cared for Archer and his older brother while Olivia Ruzic worked. Then they received approval from the Family and Social Services Administration (FSSA) to be Legally Responsible Individuals (LRIs) paid as Personal Care Attendants, meaning the state agency would pay the Ruzics for their caregiving. It was a financial relief for the family and allowed Olivia Ruzic to quit her job, splitting caregiving responsibilities with her husband — who can now go to school to become a registered nurse. 

But the Indianapolis-based Ruzics and thousands of other Indiana families could lose access to these benefits following an administrative change from FSSA to strike those payments as a cost-cutting move. Dozens rallied at the Indiana Statehouse on Monday to demonstrate their displeasure with the change. 

“I think it’s important to note that if this waiver is stripped from LRIs’ paid caregivers, there just simply will not be medical care given to the most vulnerable of Indiana,” Jesse Ruzic said.  “Because there is a severe shortage of nurses and of attendant care.”

Why the change?

The administrative change on LRIs was one of eight changes announced last week by FSSA as a money-saving response to an unpredicted $1 billion shortfall in Medicaid publicized in December. According to the Jan. 17 release, the agency targeted programs related to the Aged & Disabled waiver “because data showed this is where the Medicaid program is most acutely seeing an unanticipated growth in spending.”

An FSSA spokesperson declined to provide estimated savings associated with the various changes, saying, “As outlined in the announcement, the solutions were identified through a deep analysis of the drivers of the unexpected variance. FSSA and its Office of Medicaid Policy and Planning will closely monitor the financial impact of the solutions.”

But Rep. Ed DeLaney, D-Indianapolis, said he’d heard similar stories from his own constituents about the loss of attendant care. He said he worried that, following the December announcement, Hoosiers would lose care. 

“I’m told … that up to half a billion dollars in erroneous estimates were because they didn’t estimate the growth of those programs,” DeLaney said. “I was afraid that we’d find some group of Medicaid beneficiaries to take something from.”

Key budget architects for the state — Lizton Rep. Jeff Thompson and Mishawaka Sen. Ryan Mishler, both Republicans — agreed that the changes suggested were a start to offsetting costs. But Mishler didn’t rule out further fiscal changes, saying that the agency had done everything it could “in house.”

“… there are some savings there, but there’s still a gap. So there’s other things we’re going to have to work on,” Mishler said. “And the rest will probably be things that have to undergo budget committee review or even legislative changes. I think they’ve gone about as far as they can internally.”

FSSA also declined to comment on whether further program changes, using the methods described by Mishler above, were possible. 

DeLaney said he anticipated some members of the General Assembly were using the news from December to build their arguments to cull recipients or cut services for Medicaid, the fastest-growing portion of the budget.

“I don’t think we should blame people who are on Medicaid for this math error,” DeLaney said.

More on LRIs

At the Statehouse, parents decried the clawback from FSSA for a program they thought would be permanent, as the agency previously discussed. Though Congress allowed states to offer payments to families of medically complex children as far back as 2017, Indiana only adopted the program during the COVID-19 pandemic. 

Indeed, some noted that the only way this move would save the state money is if parents provide the care unreimbursed — since the state’s nursing shortage meant there were few nurses for hire.

Others openly worried about the pressure to send their children to a pediatric nursing facility — of which there are few — instead of caring for them at home. These families would have until July to decide, though FSSA’s public comment period ends on Feb. 16.

As an alternative, FSSA suggested families look into Structured Family Caregiving, which reimburses on a per diem basis that The Arc of Indiana says ranges from $30-70 — while LRIs can seek reimbursements up to $15 per hour. Someone who is not an LRI — even an aunt or a cousin — can still be reimbursed for personal attendant care.

Arc advocates on behalf of people with intellectual and developmental disabilities and has released several fact sheets breaking down FSSA’s changes. Karly Sciortino-Poulter, the director of the Arc Advocacy Network, said the monies given to parents weren’t just a paycheck, they allowed families to pay their bills and put food on the table. 

“We’re talking about family members who often are not able to maintain a job, regardless of profession or their education. Not because they don’t want to, but because their loved one doesn’t have the staff available to help them stay alive,” Sciortino-Poulter said. “When you’re constantly having to take off work to take your child to this specialist or that specialist and yet another specialist — there’s only so much flexibility a lot of employers are willing to make.”

Both parents in the Ruzic family were approved as LRIs, meaning they had to be hired by a home health agency who agreed to oversee their training and track their hours for the state. They have a case manager and, more importantly, make a livable wage. They say respite care, their only other alternative, wouldn’t work because there aren’t enough nurses for all the hours of care Archer requires.

“We were a single income household before and if we had to do it again, we could but … an apartment is not going to fit our son’s medical bed if we lose our house. But we could survive,” Olivia Ruzic said. “But we know parents who are widowed and single parents…”

“And how is a single-parent household going to do this?” Jesse Ruzic finished.