Parents with critically ill disabled children seek to halt FSSA changes in attendant care

Lt. Gov. Suzanne Crouch (red sweater facing the camera) listens to parents of critically parents of critically ill children during a meeting Friday in Warsaw at the American Legion Post 49. The parents sought a meeting with Crouchin hopes of putting the brakes on changes in a program overseen by the Indiana Family and Social Services Agency that pays them to care for their children. Newsd Now Warsaw photo by Dan Spalding.
By Dan Spalding
News Now Warsaw

WARSAW — A funding crisis looming in Indianapolis was front and center in Warsaw late Friday afternoon.

More than dozen families of critically disabled children who need 24/7 care converged on Warsaw Friday to meet with Lt. Gov. Suzanne Crouch to express their concerns over a $1 billion shortfall that has led a state agency considering the idea of slashing a program that pays parents to care for their children — known as attendant care.

Parents learned earlier this month of a plan by Indiana Family and Social Services Agency to eliminate an attendant care program that pays parents to provide care for the children under the age of 18 – a program established in 2017 that they were led to believe would be permanent.

Major changes to the program are set to take effect July 31 and parents are calling on lawmakers to intervene.

They have started a petition and are hosting rallies each Monday for the next few weeks.

A group of parents have begun networking and have 15,000 signatures on a petition to at lease pause the change until it can be more closely examined.

For many of the adults, Friday’s meeting was the first chance to meet each other face-to-face.

Some of the parents brought their children to the meeting in expansive mobile chairs.

Parents contend they have quit their jobs to take on the responsibility and that the shortage of specially trained nurses and the lack of space at two institutions designed for children that could care for the children leave them with very few options.

“That’s why I drove two hours to get here,” said Olivia Ruzic, a parent who lives in Indianapolis. “When I say there are Hoosier children who are going to die, that’s not an exaggeration.”

Crouch met with the parents and heard an earful while at the American Legion Post 49. She listened and took notes for nearly 45 minutes.

She was asked if the unexpected change in policy represents a crisis.

“For these families, for these children, yes it’s a matter of some urgency,” she said in a phone call Saturday morning.

A former state lawmaker,  Crouch did not rule out the chance the state legislature could take up the issue in some way during its current session.

“I think the short-term solution, at least for the parents, is that it be paused and let’s look at the big picture and let’s really figure out how we can arrive at a solution that is not harmful to the children and the families,” Crouch said.

Crouch had originally planned to host a meeting with veterans at the American Legion and added time to sit with the parents after they reached out to her.

They sought her out, in part because of her role in state government but also because she chairs the state’s intellectual and developmental disability task force.

Crouch was also joined by State Sen. Ryan Mishler who was there to visit veterans and also met with parents who have been part of the state’s attendant care program.

Mishler chairs the Senate Appropirations Committee, which oversees nearly all spending in state dollars.

He declined comment on the issue until he reviews some of the finances.

The 2017 legislation that opened the door for the program was intended to be permanent, according to parents. You can learn more about the program here.

You can also learn more at this page.