Official: State shortchanging autistic kids

AUTISM: Feds step in to increase Medicaid waivers

Font Size:
Default font size
Larger font size

CROWN POINT | The largest study of its kind has found about one in five American children now suffers from autism, higher than any rate previously reported.

In recent weeks, the media have given widespread attention to the surge, and advocates have called for federal and state legislators to step to the plate with more dollars.

But it nothing new to Herb Grulke, executive director of In-Pact, a homegrown organization founded 31 years ago by parents of autistic children.

"Parents were as frustrated 30 years ago as they are today," Grulke said of the growing problem and shortage of resources.

In-Pact's early success with placing autistic children in group homes led to the state requesting it broaden its scope to include a diverse group of the developmentally disabled.

"They were spending $60,000 a year (per child) for care in an institution," Grulke said.

Placement in a group home saved the state $20,000 per child. The average child was expected to live to age 70.

"It didn't take them long to do the math," Grulke said about the state's penchant for the bottom line.

According to Grulke, the bottom line still rules state government, explaining why helping autistic children is painfully slow.

Grulke is so versed in the troubling nature of autism -- and the state's attitude toward it -- he has served on the Indiana Legislative Commission on Autism for 17 years.

"The thing that will kill a bill is fiscal impact," he said.

For that reason, this legislative session Grulke expected only one of its two House bills to succeed because it required no additional funding.

That bill involved the training of emergency personnel like police officers, firefighters and paramedics. Happily, the bill could be killed because of voluntary compliance by emergency services, Grulke said.

The other bill allowed schools to add a day for in-service training for teachers and paraprofessionals.

"If you have 5,000 professionals and if you assume an extra day of pay, that bill had a lot less likelihood of being approved," Grulke said.

Nevertheless, Grulke said the state is starting to make some improvements, but only because of heat from the federal government.

Take the Medicaid waivers for autism, for example.

Lake County restaurateur Jim Gerodemos, who already has spent $120,000 in savings on services for his autistic son, applied for the waiver two months ago.

"We were told he'd be eligible after high school," Gerodemos said. "He's 4. What do we do in the meantime?"

As of July, 331 families with autism waivers were receiving services, but there were 3,054 on the waiting list.

The average amount of time spent on the waiting list is eight years.

"And that's assuming you apply today," Grulke said.

Coveted by families who otherwise pay an average of $961 a month in private services for an autistic child, the state has increased the number of waivers, according to Grulke.

But that's only because the federal government took notice of the state's exorbitant waiting lists, he said.

"The federal government says you can have a waiting list, but there was encouragement from Washington to start seeing some movement," he said.

The state is expecting to add 200 additional waivers during the next two years without further pressure from the commission, Grulke said.

"We're somewhat pleasantly surprised, but the proof will be in the pudding," he said.

Print Email

/news/local
Current Conditions
45° F
Sponsored by:

Connect with Us

My NWI