INDIANAPOLIS — Indiana Lt. Gov. Suzanne Crouch is calling for an independent audit of Indiana’s Family and Social Services Administration to figure out how the agency’s budget projections could have come up a billion dollars short of what was really needed.
FSSA has proposed program cuts by July to make up some of that budget shortfall.
And that has parents of medically complex children, who would be affected by those cuts, calling on lawmakers to stop that from happening.
Rosie, 3, was all smiles Tuesday at the Indiana Statehouse.
Her mom, Melanie, managed a smile sometimes, too, despite knowing her daughter could have a seizure at any moment.
“We never know when Rosie’s going to have a seizure and on her worst days, she can have up to 100 seizures a day,” Melanie explained.
Any one of those seizures could end Rosie’s life.
“Every seizure propels us into a state of emergency, and it becomes a race against time,” Melanie explained, saying often Rosie needs medicine and oxygen to get a seizure under control.
That’s how it’s been for Melanie since Rosie was diagnosed with a rare form of epilepsy when she was just an infant, making Rosie’s care a 24-hour-a-day job. A job Melanie has been paid for as part of the state’s Attendant Care Program.
Now, because of a massive shortfall to the state's Medicaid budget, FSSA has proposed cuts to that program.
"Medically complex children are not scapegoats for their budgetary incompetencies,” Melanie said of the proposed cuts.
Under the FSSA proposal, parents like Melanie, would no longer be paid to care for their own children.
Right now, they get $10 to $15 an hour.
Others could be hired to do the job, but with a shortage of medical professionals, coupled with what it costs to hire them, Melanie said it’s better to let parents do the job and get paid.
“This is not a matter of preference or convenience. This is an absolute necessity,” she said.
FSSA wants to move parents to a different program that would give them a daily stipend to pay for care.
Melanie said that’s not enough.
“You wouldn’t even be able to afford a registered nurse for two hours,” she explained.
Crouch, who’s also the chair of the Intellectual and Developmental Disability Task Force, said she wrote a letter to FSSA with several questions, like how many kids with medically complex needs could be affected by the program cuts.
So far, Crouch said she hasn’t received any answers.
“It’s not just about numbers. It’s not just about statistics. It’s not just about the bottom line,” said Crouch. “We are talking about real Hoosiers with real issues, with families that are trying to fulfill those needs."
Families, like Rosie’s, are now calling on lawmakers to halt the proposed cuts through legislation.
“One thing I want the legislators to know is that medically complex parents are happy to do our jobs. We keep our noses down and we try to keep our kids alive,” said Melanie.
“You pulled a rug out from underneath us and we’re not going to let that go. There are repercussions and we fully intend to take them, so do the right thing or someone will make you do the right thing,” Melanie said.
A proposed bill in the House, House Bill 1386, called for more transparency and accountability from FSSA. It never made it to the floor where lawmakers could have offered more amendments to it.
Some of the language from that bill, still could end up in a Senate Bill in the second half of the session, but that’s not guaranteed.
13News reached out to FSSA for comment today, about the lieutenant governor’s call for an audit, but did not hear back.