Aguirre worked for year to require insurance coverage for autism

  Steven Ugol turned 5 on Saturday. As his mother, Char, prepared for his birthday festivities, she had other reasons to celebrate.

  Thanks to a bill she set in motion almost a year ago, beginning in June of next year insurance companies in Arizona will be forced to cover the costs of treatment for children like her son, who've been diagnosed with autism.

  Gov. Janet Napolitano signed the bill, known as "Steven's Law," on Friday.

  Ugol's effort began last July with e-mails to legislators. One those e-mails went to Sen. Amanda Aguirre, D-Yuma.

  "She wasn't a constituent," Aguirre told The Sun. But Ugol's appeal tugged at Aguirre's heart strings and the senator set to work a year ago to craft a bill requiring insurance companies to cover the cost of treatment for autistic children.

  As a health care professional, she had worked with a child with autism in the early 1980s.

  "At the time, we knew little about it," Aguirre said. "Today we know that with therapy early on, it can make a difference. The children can and do respond to early intervention."

  With such help early in their lives, many of these children can attend regular classrooms and grow up to become regular citizens rather than be placed in special education or even institutionalized, she said.

  "All of society will benefit," she said.

  Aguirre's bill won Senate approval but was substituted as a strike-everything amendment into HB 2847 by Rep. Bill Konopnicki, R-Safford, to reflect a compromise in response to concerns raised by insurance companies. The compromise caps coverage for children ages 9 to 16 at $25,000 a year while leaving the cap at $50,000 for younger children. It also guarantees no further mandates on autism coverage until at least 2011.

  The law applies to businesses that employ more than 50 people. It exempts individual policies and businesses with less than 50 people. It also does not currently apply to Arizona Health Cost Containment System, which would require a federal waiver, something that will be sought, Aguirre said.

  From the experiences in other states such as South Carolina that have similar legislation, she said she expects the new law will have only a negligible impact on the cost to businesses for insurance coverage of their employees.

  However, the law will alleviate the financial hardships faced by parents of autistic children, Aguirre said.

  "No family should go bankrupt or lose their home because they cannot afford treatment for their children who are suffering with autism disorder."

  "This was the right thing to do," she said. "There was tremendous advocacy ... an incredible need."

  Ugol and other supporters spoke at hearings and held a candlelight vigil at the State Capitol.

  "This means a life-changing situation for so many families," Char Ugol said from her Scottsdale home. "You can no longer say that these kids don't count."

  Ugol said her son appeared normal until age 3, when he lost the ability to speak and developed other symptoms of autism. Because her family's health insurance didn't cover treatment for the disorder, Ugol said she and her husband spent about $50,000 a year on speech therapy and one-on-one behavioral analysis.

  Today, after about 30 hours a week of therapy, Steven is able to speak simple sentences. In the fall, he'll attend a regular kindergarten, something his mother said would have never happened without therapy.

  "Kids can normalize," she said. "They just need a lot of help in the beginning. It makes a huge difference catching it early."

  Cynthia Macluskie, a Cave Creek resident who joined Ugol's grassroots effort, said she cleaned out her life savings, worked nights and weekends and borrowed money to pay for her son's treatment when her health plan wouldn't cover it.

  "What was so devastating to us … was laying in bed at night knowing that you're not getting the best care for your child because you don't have the money," she said. "It's just the worst feeling as a parent."

  Doctors once said her son Mark, now 9, would have to be institutionalized for life. After years of expensive therapy, he's no longer diagnosed as autistic, and Macluskie looks forward to sending him to college.

  Mark went to the Capitol to address lawmakers and even made his case to House Speaker Jim Weiers, R-Phoenix, his mother said.

  "He developed a close relationship with the speaker and was really instrumental in helping us move the bill along because legislators could see what a difference treatment makes," Cynthia said.

  Wendy Fournier, president of the Nixa, Mo.-based National Autism Association, said parents shouldn't have to face financial ruin to help their autistic children.

  "Many times insurance companies won't cover treatment because they don't see autism as being a treatable disease," Fournier said. "It is treatable. Kids can get better and even recover with the right treatment."

  Several other states, including New York, South Carolina and Pennsylvania, have passed laws requiring insurance coverage for treatment of autism-related disorders. Similar legislation is being considered in a handful of others, including Washington, Oklahoma and Wisconsin.

  "It's much needed," Fournier said. "We hope that this bill being passed will inspire other states to do the same."


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Sun staff writer Joyce Lobeck contributed to this report. She can be reached at jlobeck@yumasun.com or 539-6853.