The Utah Governor’s Mansion was blanketed in soft, blue light. The occasion was World Autism Awareness Day 2014, and buildings across the country were swapping bulbs to highlight a disorder that affects one in sixty-eight American children.
It wasn’t the lights that were giving alum Mirella Petersen cause to celebrate, though. Governor Gary Herbert was signing SB57 into law, making Utah the thirty-fifth state to enact insurance reform for the treatment of autism spectrum disorders.
The bill had been in Petersen’s sights for more than three years. She organized events, garnered media coverage, and campaigned to get it passed. But she isn’t a congresswoman. She’s a volunteer coordinator for Autism Speaks and the former president of the Utah Autism Coalition.
Professionally, she’s a consultant and an adjunct professor with an applied doctorate in health administration. It’s a potent combination, and, administered in high doses, it paved the way to the state capitol.
“It’s amazing to me that the bill took so many years to pass,” Petersen says. “You show up with a great idea and think it will just go through, but it took years of patience, education, and data.”
Her dedication stems from a deeply personal connection to the autism fight: one of her sons was diagnosed in January 2011. But for Petersen, advocacy goes much deeper than family ties. She believes in always speaking up—a principle she learned from her father years ago.
Before Petersen’s parents settled in Mantua, Utah, her father’s medical residency with the U.S. Air Force took the family around the globe. Despite ever-changing zip codes, Petersen found consistency in an unlikely way: competitive figure skating.
As a teenager, she hit the ice daily from 5 to 7 a.m. and then doubled back after school. In the summer she spent the entire day improving her form and building muscle. Aside from racking up trophies, her skating acumen paid dividends. By performing as an on-ice cheerleader for the Utah Grizzlies and teaching would-be Tara Lipinskis, Petersen put herself through college at Weber State University.
When it came to choosing information systems as a major, she took a practical approach. “Realizing that most women will have to support a family at some point, I pulled up salary statistics for different professions and picked the one that I thought I could do,” she says.
That levelheadedness comes, in part, from her dad, who encouraged her to choose a career that would support a family. But that’s not the most important lesson he instilled in his daughter. “He always reinforced that it’s not appropriate to let yourself get walked on.
You’ve got to be assertive and stand up for yourself,” she says. “That message has meant a lot to me when I’ve come into situations where I felt like it would be easier to keep my mouth shut.”
Higher Ed
Fresh from her undergrad, Petersen secured a job as an electronic data interchange manager for a billing service in Salt Lake City. As she began building interfaces, Petersen realized the company could tighten its turnaround time and significantly reduce the amount of uncollectible debt. In a meeting, she approached the vice president with her idea. His response was surprising.
“We have people here with master’s degrees and twenty years of experience. What makes you think you have more skill to improve the process than they do?”
Wanting to be taken seriously, she began shopping for a graduate program.
While her father exemplified taking a stand, Petersen’s mother was equally firm in her belief in higher education. She had pursued an advanced degree in nursing during Petersen’s formative years.
“One year my dad gave my mom a chain saw for her birthday because that’s what she wanted,” Petersen says. “For my mom there has never been women’s work and men’s work. It’s just work. She really inspired me to continue my education.”
In 2004 Petersen began the Marriott School’s Master of Information Systems Management program with one goal: to finish the program in a year. Although she had to get special approval to take twenty-one-credit course loads, she achieved her objective with a 4.0 GPA.
“My experience at BYU shaped me in many ways,” Petersen says. “I wanted to make a difference in the healthcare industry, and my education opened the door for me to be there for my family while engaging in the initiatives I’m passionate about.”
Best Outcomes
Family was weighing on Petersen’s mind as she and her husband, Justin, drove home from a Thanksgiving party in November 2010. The car, for once, was quiet. While their sons Conner and Mason were typical boys, four-year-old Jaden suffered from frequent meltdowns, avoided eye contact, and showed signs of delayed speech and obsessive tendencies. Breaking the silence, the couple acknowledged they needed to seek help for their son.
Not long after, Jaden was diagnosed with classic autism. His main deficit was receptive language—he could repeat phrases but didn’t understand what was being said to him. “A lot of times children with autism will appear defiant when really they aren’t understanding you,” Petersen explains. “As a parent you treat defiance very differently than you treat misunderstanding.”
Following the diagnosis, Petersen called her insurance provider to preauthorize medical care only to get a resounding “No. You live in Utah.” Luckily, she knew the right questions to ask and found a loophole. Since her policy was funded out of Florida, a state that requires autism coverage, Jaden began getting the treatment he needed.
“It was like we had peeled back layers of anxiety and stress to reveal a compassionate, loving, and capable child,” Petersen says. “We came so far in a short amount of time because Jaden had the tools to manage his maladaptive symptoms.”
But other Utah families weren’t as lucky. With out-of-pocket costs soaring above $50,000 for treatment, parents were being forced to make hard decisions when it came to getting therapy for their kids.
“As I watched my son progress and improve, I saw families mortgage their homes to be able to afford care,” Petersen says. “It didn’t sit right with me.”
Speaking Up
Ask Petersen how she defines advocacy, and she’ll give you one word: education.
“If you’re advocating for your opinion, you don’t get very far,” she says. “But if you’re educating people on the data that exists and the changes that need to be made based on that data, you’re far more effective.”
She began by educating herself on previous reform attempts in Utah. What she found was Clay’s Law, a bill that had been unsuccessfully run in 2009 by Senator Howard Stephenson with the help of Leann Whiffen, Clay’s mother.
Petersen reached out to Whiffen and was soon named president of the Utah Autism Coalition. The first order of business: facilitate get-togethers between legislators and families affected by autism. Eighty-seven meetings were held throughout the state during Petersen’s first year in office.
“To arrange a meeting with a senator or representative when their child with autism was almost guaranteed to have a meltdown wasn’t easy, but to those parents’ credit, they rallied together to educate the legislature on the importance of early treatment,” Petersen says.
Hat Trick
While most of Petersen’s work happened behind the scenes—including organizing the construction of a giant ball pit to represent the 18,500 Utah children affected by autism—she was always visible in the capitol building, thanks to some inspiration from her hero, Alice Paul.
One of the key strategists of the women’s suffrage movement, Paul’s work led to the passage of the Nineteenth Amendment in 1920, despite the fact that she hated public speaking. But what she lacked in presence, she made up for in logistics. Paul was a master at understanding the talents of those within her organization—something Petersen has applied to her own advocacy. “If you get the right people in the right place at the right time, the effort moves like a freight train,” Petersen says. “You don’t have to push it.”
That’s not all she borrowed from Paul, though. Each time Petersen submitted a note to the session floor requesting a meeting, she’d pen, “Look for the woman in the red hat.” Her vintage chapeau guaranteed she stood out among a sea of lobbyists.
“It worked like a charm,” Petersen says, smiling. “I didn’t have to get aggressive to keep my meetings.”
Family Victory
Thanks to the coalition’s tireless efforts, SB57, sponsored by Senator Brian Shiozawa, met with approval in the both the House and the Senate this spring. Beginning in 2016, many Utah children diagnosed with autism will have access to psychological services, medication, and behavioral, occupational, and physical therapy.
Petersen, however, isn’t one to take credit. This was a family effort. Justin pitched in when Petersen’s doctoral work at the University of Central Michigan took priority, and the couple’s sons, who Petersen jokes now know more politicians than Disney characters, also stood on the front lines.
“Some of my favorite moments were advocating with my children,” she says. “To see Mason say to legislators, ‘This is what autism looks like for my brother, and this is the difference therapy makes,’ was powerful.”
Recently, the family relocated to Florida—the state that made Jaden’s treatment possible—for employment. After nearly a decade in healthcare IT, Petersen is also making a career move. This spring she cofounded Petersen-Eckert Consulting. The firm will help therapeutic healthcare providers receive fast and fair reimbursement for their services.
She will continue working for the National Partnership for Families as a patient and family advocate, a role she’s had since last November.
And credit Petersen’s military childhood, but the move hasn’t dented her commitment to Autism Speaks. “With the Affordable Care Act and self-insured plans that don’t cover developmental delays, we need to ensure that no matter what plan children are on, they’re able to access diagnostic testing and treatment for autism,” Petersen says.
“There’s work to be done.”
As it turns out, Petersen still has a lot to say.
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Article written by Megan Bingham Hendrickson
Photography by Bradley Slade
