"It's brutal," Passey said. "But we can't wait she needs it now."
Though Utah has yet to join the several dozen states mandating insurance coverage of autism treatment, legislators created an autism-treatment pilot program earlier this year that was expected to be voluntarily funded, in part, with private dollars. The two-year pilot was seen by many as a compromise, providing treatment for about 350 children between the ages of 2 and 6, through a combination of Medicaid, state and private dollars.
House Speaker Becky Lockhart said Wednesday that "no one has reneged on the commitment" and that the donations would be divulged in a future news conference. Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, could not be reached for comment. Two of the funders, including Zions Bank, said their pledges remained good.
"We're still committed to providing funding for that and will do so at the appropriate time, when that's indicated by the state," said Daron Cowley, a spokesman for Intermountain Healthcare.
Yet state officials say they have not received any funding though the law went into effect July 1. Not having the private dollars could reduce by more than half the number of children in one part of the pilot program, which is set to begin in the coming months.
Marc Babitz, the director of the Utah Department of Health's Division of Family Health and Preparedness, said he assumed some of the businesses may run on a budget cycle that begins in July.
"So they might delay a large donation for practical, business and financial reasons," he said. "I will admit to some frustration in not seeing donations that were reportedly promised to some of Utah's most influential legislators who sponsored and supported this bill."
But he was never told the state would definitely receive additional funding or given an exact date when the donations would materialize. Like many parents, he sees the positive in being able to help more Utah children with autism even if thousands more will remain unserved.
A recent study by the Centers for Disease Control and Prevention focusing on one small area in Utah suggested the state may have the highest autism rate, one in 47, in the country.
Three groups of children will be served in the pilot, including up to 50 covered by the Public Employees' Benefit and Insurance Program; at least 200 kids covered by Medicaid, supported by $4.5 million in Medicaid dollars; and up to 100 from the autism fund, paid in part with private dollars.
After being reassured during the legislative session that the private business contributions were secure, Laura Anderson, the vice president of the Autism Council of Utah, felt comfortable supporting Menlove as the mandate idea withered.
"Now I'm a little doubtful not because of [Menlove] that people are really going to step forward and put their money into this program," she said.
Autism in Utah
O Read more about the pilot program and advocacy groups online. > 1.usa.gov/KJgPKS