The alarm bells droned in Rose DiCianni’s ears as she tracked the milestones of childhood her little Brianna began missing. But her husband, Pete, admits he didn’t want to hear them.
Brianna wasn’t talking, but Pete’s youngest brother talked late too, he reasoned. She had a few odd obsessions, but so do a lot of kids. And she simply wasn’t as social as her older siblings, Natalie and Peter.
"You’ve got this beautiful little girl that you are so happy to have in your family and then all of a sudden things aren’t developing," he says.
Just give her time, he figured.
Time, it turns out, wasn’t what Brianna, now 5, needed.
Even now, several years after the day the doctor told Pete and Rose their little girl falls on the autism spectrum, tears choke his words.
The doctor gave them hope for her future, Pete says—if Brianna got the right help.
A small business owner who worked for a decade for a children’s charity in Elmhurst, DiCianni already knew where to find the help, unlike many parents upon first hearing a similar diagnosis. What the former insurance salesman didn’t know, however, was that the great medical benefits his company insurance offers don’t cover autism. And neither do a lot of insurance companies because, in Illinois, they don’t have to.
"I was reading the fine print of the policy and said this is crazy, how could autism not be covered by insurance?" DiCianni says.
He changed insurance companies three times. The best plan he found provides up to 30 visits a year or $5,000 for speech therapy—not nearly enough when a child like Brianna or the other 1 in 150 kids on the autism spectrum might need therapy three times a week or more.
The issue, this dad realized, went beyond his own family and his own community. Treating autism, he found, sends some families over the financial brink into foreclosure and literally tears some families apart. "I can never raise enough money to put this fire out, so the best thing to do is to change legislation," he says he decided one day.
After studying other states’ legislation that requires insurance companies to pay for autism treatment—among the best are Indiana, New York, South Carolina, Texas, Minnesota and Kentucky—DiCianni says he went to work finding people in the State Legislature willing to help Illinois
families. Assistant Majority Leader Sen. Jim DeLeo, D-Chicago, and Rep. Angelo Saviano, R-River Grove, quickly signed on. Still, even autism groups thought he’d fail, DiCianni says.
"Quite honestly, for a while I felt like I was on an island and many people thought I was nuts. Some people told me it would never see the light of day," he says.
But he says he has Brianna and all the other children with autism counting on him, so he won’t take no for an answer.
Senate Bill 1900 requires insurance companies to cover diagnosis, occupational therapy, physical therapy and speech therapy, psychiatric and psychological services and applied behavioral therapies up to $36,000 a year with an unlimited number of visits for kids on the autism spectrum until age 21.
SB1900 passed out of the state Senate unanimously in April and had 81 co-sponsors by the time it moved out of the House Rules Committee to the Human Services Committee. At press time, a hearing on the bill by the committee had not been set.
"I want every kid to have the opportunity she’s had," DiCianni says, watching his blonde-haired tomboy talking and laughing with her mom on the swing set in the backyard. "Fortunately she’s got a dad that’s been able to reach into his pocket and get her whatever she needs."
Treatment costs for Brianna have been up to $3,000 a month, he says. For a family making $65,000 a year, that’s difficult. For the family making less, it’s impossible.
Insurance should never be a barrier to kids reaching their potential, he says.
"I think parents have to realize that they are the biggest advocate for their kid, whether it is fighting for their education, whether it is fighting for proper insurance, whether it is fighting for legislation," he says.
Championing the bill has been a sacrifice for his family, he says, but it’s a sacrifice his family needed to make.
"When you see how many kids will have insurance coverage, to me that’s huge. To be able to touch 10,000 kids and give them the ability to be independent is just huge. This will be probably the biggest thing I’ll have done in my life."