Hundreds pack Statehouse to oppose Medicaid cuts

The event was organized by the Indiana Autism Coalition, bringing together more than 100 different autism support groups in Indiana. The event drew groups from many Medicaid-related interests, all with a common message: This was the face of budget cutting. Every dollar sliced from Medicaid is a dollar someone here would have to make up for.

The moral of all their stories was the same: "This is hard enough as it is. Please don"t make it any harder."

The rally was spurred by a proposal to flatline the Medicaid budget in the Indiana General Assembly, which organizers said would require cutting $263 million from the program. IAC co-founder Chris Doerr MCed much of the event, as his 4-year-old autistic daughter Heidi peeked out from behind the podium.

"We will be stronger, better, faster and more efficient in accomplishing our goals," Doerr said. "The ultimate goal is a better, simpler life for anybody affected by autism."

Ron Pollack, executive director of Families USA and an expert on Medicaid economics, stated that cuts in Medicaid tend to have a trickle-down effect on the rest of the state economy, and that Indiana's Medicaid program is not that strong to begin with. "Indiana ranks very low in comparison to other states," Pollack said. "So you have to understand, when we"re talking about making Medicaid cuts in Indiana, the base from which you start is not great."

Mary Anne Neiner, a member of the autism support organization MAAP, explained the difficulty of explaining to a mother that her insurance doesn't cover the cost of care for her autistic child. "She looked at me, eyes brimming with tears, and said, "How are we ever going to afford that?" Many of us know that sinking, sick feeling she had."

Nearly everyone nodded; some clapped. "Nobody, anywhere should ever have to feel the way that mom felt."

She stated that 90 percent of insurance doesn't pay for the care autistic children require. And it adds up quickly; therapy alone is $80 to $100 per hour. Neiner, like 350 other families in Indiana, is on a state waiver program that covers most costs of the care for her 12-year-old autistic son Eric. Prior to the waiver, she spent about 12 percent of her income on his care; now it's closer to 1 percent. "It has allowed us to put money aside for college for our other child. Autism affects not only the child but the well-being of the entire family."

But most are not so lucky. Two thousand families are currently on the waiting list to join the waiver, with an estimated six-year wait. One of those 2,000 families is that of Dr. Sean Trivedi, his wife Michele and their 5-year-old daughter Gabrielle. Gabrielle's care costs $40,000 a year - more than Trivedi's entire pre-tax income as an emergency medicine resident in Westfield. In June 2001, their insurance began to pay half under new state rules classifying autism as a neurological disorder. That still leaves $20,000 per year - a crippling cost for almost any family.

The Trivedis are on the waiver waiting list, but they expect to be waiting three years before they receive it. Provided, of course, that Medicaid cuts don't slash into what's already there. "Our hope today is to keep them from cutting anything out of the budget," Neiner remarked.

Despite the hardships of her care, though, Michele Trivedi said she wouldn't change Gabrielle for anything. "It's been a huge blessing in my life. Yes, it's a hardship, and yes, it's a difficulty, but it's a blessing," Trivedi said. "Gabrielle knows that everybody is beautiful and everybody is valuable, and she teaches me that every day."

More information on the IAC and their activities can be found at www.arcofindiana.org.