INDIANAPOLIS (WISH) — A mother of a child with severe epilepsy on Tuesday called proposed changes to a Medicaid care program discriminatory.

More than a week has passed since a hearing in which members of the Indiana Intellectual and Developmental Disabilities Task Force asked Family and Social Services Administration (FSSA) officials for specifics about their decision to end a program that pays parents and legal guardians to act as full-time caregivers for medically complex children.

In a news conference in her office Tuesday morning, Lt. Gov. Suzanne Crouch, who chairs the task force, said FSSA officials still have not answered her or lawmakers’ questions about how many people are affected, how much parents would be paid under a new model or whether the program was ever intended to be temporary or permanent.

The agency has not answered such questions asked repeatedly by News 8, either, instead referring to its FAQ web page regarding the change. The Family and Social Services Administration did not immediately respond to News 8’s request for comment for this story on Tuesday.

Crouch said she now wants independent, outside audits of the Family and Social Services Administration to prevent any future funding shortfalls.

“We need to be sure that these kinds of programs don’t have a fivefold increase in cost over a three-year period of time and nobody catches it,” she said. “It’s about ensuring care but it’s also ensuring that our tax dollars are accounted for and are spent properly.”

Crouch said she has called on the legislature to address the issue though she stopped short of calling for specific policy actions, saying such decisions are up to lawmakers.

The Family and Social Services Administration in January announced it would end the program, known as the attendant care program for legally responsible individuals, on July 1 to help close a $900 million funding shortfall. FSSA officials revealed the problem to lawmakers in December, claiming it was the result of an accounting error. The agency has proposed moving families to a new program called structured family caregiving, in which parents would be paid a daily stipend rather than getting paid by the hour.

Melanie Kandzierski said it wouldn’t begin to cover her needs.

“You wouldn’t even be able to afford a registered nurse for two hours,” she said. “It’s not equivalent and it’s discriminatory because they’re removing the services that would allow my child to be part of the community.”

Kandzierski’s daughter, Rosie, has Dravet Syndrome, a rare and severe form of epilepsy that impacts cognition, development, and behavior. She said any seizure caused by Dravet Syndrome could be fatal, so she has to monitor Rosie at all times.

Kandzierski said turning Rosie over to skilled nursing care isn’t an option because nobody knows Rosie’s needs like she does. As an example, Kandzierski said the standard protocol for health care professionals is not to administer medication to stop a seizure until at least five minutes into an episode.

For her daughter, she said she needs to administer medication immediately. She said a trained nurse might not understand that.

Sen. Fady Qaddoura, a Democrat from Indianapolis, who serves on the State Budget Committee and was thus one of the first lawmakers to be briefed on the Medicaid spending shortfall, said lawmakers could fix the problem by simply pulling money out of the state’s budge reserves, which contained a little less than $3 billion at the end of the last budget year on June 30.

He said he put forth a request in December to transfer $700 million out of the reserve into the Medicaid reserve fund but budget writers instead sent it to the general fund. Qaddoura said he’s deeply concerned by the FSSA’s decision to cut services and he doesn’t believe lawmakers can trust the agency to fix the problem on its own.

“Without the engagement of the General Assembly, we are deferring to a state agency to deal with a $1 billion problem,” he said. “I think it’s extremely critical for the General Assembly, with no hesitation, to get engaged with this crisis.”

Tuesday marked the halfway point for the legislative session, which ends no later than March 14. Qaddoura said that gives lawmakers more than enough time to step in with a legislative solution.