PHOENIX — Char Ugol cried as she described her son Steven's diagnosis with moderate autism at age 3, how he lost his ability to speak, how he had difficulty moving and feeding himself. He no longer could call her "Mama," she said.
With treatment, Steven improved greatly, though Ugol said her health insurance wouldn't cover the cost.
"Today we are amazed with Steven's progress," said Ugol, who lives in Scottsdale. "These therapies have changed Steven's life course from severely developmentally disabled to nearly indistinguishable from his peers."
Ugol joined Sen. Amanda Aguirre, D-Yuma, at a news conference Tuesday announcing a bill that would create "Steven's Law," which would require health insurance plans to cover treatment of children with autism-related disorders.
Nineteen states and Washington, D.C., have such laws, and six others besides Arizona are considering them.
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"Insurance companies will not do this on their own," Ugol said.
Aguirre said she sponsored the bill because, as a dietitian who worked with special-needs children back in the 1980s, she saw how autism affects patients and their families.
"I strongly feel that having a child with special needs should not be cause for families to file for bankruptcy, lose their house or be cause for divorce," Aguirre said, flanked by a group of fellow Democrats and several advocates for those with autism.
Ugol, who said she cannot work because she must care for her son, said the stress of trying to pay for the treatment was overwhelming.
"It's terrible to not be able to afford the only help you know is going to help your child," Ugol said.
SB 1263 would apply to employers with 50 or more employees. Smaller employers and the Arizona Health Care Cost Containment System would be exempt. Aguirre said she might amend the bill later to include AHCCCS, which would require a federal waiver.
The bill calls for coverage of diagnosis and treatment of autism spectrum disorder, including autistic disorder, Asperger's syndrome and pervasive developmental disorder. It would cover treatments including speech, occupational, physical and behavioral therapies and psychiatric and psychological care.
About one child in 150 develops autism, said Jim Adams, an Arizona State University researcher who has an autistic daughter and studies the disorder. Adams spoke on behalf of the Autism Society of America.
"It is a devastating disorder. If left untreated, children with autism will end up in group homes," Adams said.
Adams said up to half of children with autism can recover with treatment.
Supporters said the overall cost of the legislation would be 0.5 percent of insurance premiums.
"The state of Arizona cannot afford not providing care to kids that need it, especially autism," Aguirre said.
Regena Frieden, a spokeswoman for Blue Cross Blue Shield of Arizona, said the insurer is reviewing the bill and hasn't taken a position. She added that the company usually opposes legislative mandates because they raise costs.
Several hundred people attended a candlelight vigil in support of the bill Tuesday evening on the State Capitol lawn. Speaker of the House Jim Weiers, R-Phoenix, was among those who addressed the crowd.
Among those listening was Surprise resident Hillary Santoro, who said her 2-year-old son is about to begin treatment for autism. Because her health plan won't cover it, she dearly hopes Aguirre's bill becomes law.
"I would pay anything to give him therapy, but it would help," Santoro said.
