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Despite assurances during the Legislative session that major insurance companies and a bank would donate $1 million toward a new autism treatment pilot, the state has not yet received any money.
That could halve one part of the program, set to begin this summer, at a time when a study of a small area in Utah indicated the state could have the highest autism rate in the nation.
"As of right now there is no money," said Marc Babitz, director of the Division of Family Health and Preparedness at the Utah Department of Health. "I am not aware of one private donation."
But Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, says there is "no question" that money is on its way.
"We've been working with the entities this past week working out the details," she said.
Expected donor Zions Bank did not immediately comment. Intermountain Healthcare says it plans to provide financial support although the details are still being finalized.
The two-year pilot program is expected to pay for therapy for about 350 children between the ages of 2 and 6, through a combination of Medicaid, state and private dollars.
Three groups of children will be served, 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. Those children may be on private insurance or be uninsured.
Babitz said he remained hopeful the private money would still materialize; $1 million in state dollars will become available in July.
"I know how people have to budget their funds," he said. "If someone is going to donate $100,000 or a million it's not just sitting around in a bank account."
Whether the private dollars appear or not, the pilot program will only be able to serve a small fraction of the number of Utah children with autism, which some estimate to be as high as 5,000. Children served by the autism fund will be selected in a randomized process, not necessarily based on the severity of their diagnosis.
The earliest the treatment program will start is August, due to the bureaucratic steps that remain, such as a public comment period.
"We know the tremendous need," Babitz said. "It's better to take one step forward than do nothing."
But for one advocate of families with autistic children, the fact that the dollars have yet to show up is not a surprise.
"I'm not shocked," said Mirella Petersen, president of the Utah Autism Coalition. "Because historically in every single state [insurers] have not done that until they have been required to do something."
From New Jersey to New Mexico, a growing number of states are requiring health insurance to cover treatment for autism, the cost of which can run in the tens of thousands per year.
"The fund itself is an ineffective medium," she said, explaining that families would like to be able to access treatment directly. "Even more money wouldn't help that much if we don't expand the age range to cover the bulk of the children that need help."
Autism in Utah
To learn more about the pilot program and advocacy groups, go to http://1.usa.gov/KJgPKS.