BLOOMINGTON, Ind. — "This little light of mine. I'm gonna let it shine. This little light of mine. I'm gonna let it shine," sings Matt Roy, strumming a guitar in the living room of his Bloomington home.
The 32-year-old is singing to the 2-year-old little boy next to him – his son, Eli.
"He's lively and spunky and very smart, but it's been rough. It's been hard," said Matt, looking back on his journey since becoming as a single dad after losing his wife, Kristen.
"She wanted to have him so bad," said Matt, choking back tears. "We loved each other. I miss her."
Kristen got COVID-19 six months into her pregnancy and had to be hospitalized.
Eli was born soon after, three months prematurely, by emergency cesarean section. He then spent six months in the NICU.
"You could put him in my Converse shoe — he was that small," Matt recalled.
Kristen never recovered. Two weeks after Eli was born, his mother died.
"They told me that they could no longer do anything for her. Her lungs were not working for herself. The machine was doing everything for her, and it was prolonging her agony," said Matt, remembering the day he let his wife go, promising her that he would do everything he could to be a good father to Eli.
"I see her in him a lot, and I see myself in him a lot," Matt said, smiling.
It hasn't been easy, though.
Eli has several medical issues that require constant care, like the G-tube he eats through and the oxygen he needs when he sleeps.
Recently, he was also diagnosed with autism. All of it is a result of complications from Eli's premature birth.
Matt said being able to get paid through the state's Attendant Care Program has allowed him to earn a living, while staying home to care for his son's medical issues.
"That has been the only way we have been able to sustain here," Matt said.
Now with those benefits on the line, Matt isn't sure what he's going to do. His mom helps him, but he said she herself isn't well.
He's not the only parent of a medically-complex child concerned about the future.
Hundreds have come to the Statehouse over the past month, protesting proposed cuts to the state's Attendant Care Program.
Under the program, parents like Matt have been able to be paid hourly to stay home and care for their medically-complex kids.
The Family and Social Services Administration wants to shift those parents to a different program that would give them a daily stipend for their children's care, instead of an hourly rate.
Other family members, including stepparents, could still receive an hourly wage through the Attendant Care Program, just not biological parents.
Lawmakers on both sides of aisle say they're meeting with families and talking to FSSA to see what can be done.
"I met with families yesterday on this issue," said Republican House Speaker Todd Huston following Thursday's session.
"We want to find the right spot on all of this, and we care very much about supporting Hoosier families most in need, and so we'll continue to work with FSSA to find the right balance between supporting these families and also being fiscally responsible," Huston said.
In a public meeting Thursday, the FSSA said 1,622 kids would be impacted by the proposed changes, which came after FSSA announced in December an almost $1 billion shortfall to its Medicaid budget.
FSSA says the change would help make up $300 million of that shortfall.
In that same public meeting, the FSSA released new numbers showing how much the Attendant Care Program has grown in just the last few years.
The costs went from $9.3 million in 2022 to a projected $172 million this year.
Much of that, they say, is because of the number of hours people are claiming to work.
Two years ago, 10% were claiming more than 60 hours a week.
By the end of last year, it had grown to 47%, with some claiming to work as many as 100 hours a week.
13News' partners at the Capital Chronicle have been covering this as well.
According to their editor, Niki Kelly, the program began during the COVID-19 pandemic when families couldn't find in-home medical help for their children with special needs because so many nurses and others were on the frontlines fighting COVID and the world was pretty much shut down.
"So they decided to continue the program after the pandemic, but I don't think they really expected as many parents to jump onto the program, and they also didn't have any guardrails around it, and so they said, 'Whoa! Whoa! Whoa! We can't afford this on a long-term basis.' So they're trying to figure out how to help the families but protect the state budget," Kelly said.
Matt says he gets paid $11 an hour and claims eight hours a day, seven days a week.
"I make between $500 to $650 a week," he explained.
If FSSA takes parents like Matt off the Attendant Care Program and switches them to a daily stipend payment, Matt said it won't be enough to cover the care Eli needs if he starts working outside the home, instead of being employed as Eli's caregiver.
"Where do you think we'd get the money to hire somebody in a situation like this?" Matt asked.
Not to mention, said Matt, he knows best how to care for his son.
"They would come in with little knowledge of anything that he's been through," Matt said.
And it's been a lot, even if little Eli doesn't realize it yet.
That's why Matt said he's ready to fight the proposed cuts anyway he can.
"I'm wiling to stand up and fight and speak truth," he said.
For Kristen, for himself, but most of all for the little boy, who's become his little light.