Shayan Forough watches a car roll over a pine cone he placed in the middle of the street.

“Ow,” he said. “Can we watch movies on Christmas Eve?”

He asks the question repeatedly to his mother Arzu Forough as they stand by a park near the family’s Kirkland home.

Shayan then suddenly breaks out into a song.

“Hail to Aurora!” the 17-year-old Juanita High School student sings.

To anyone on the outside, Shayan’s communication may seem random.

But to his mother, the fact that he can communicate at all is something to celebrate.

“He still has limited language proficiency but he is still making progress,” she said. “He is spontaneously asking questions this year that he wasn’t last year.”

The two have cleared many obstacles since Shayan was diagnosed with autism at 2 years old. Shayan has struggled with learning to communicate, developing motor skills, making connections with other humans and even overcoming self-injury. But he has made great strides in these areas thanks to behavior therapy.

He is also the inspiration behind one of his mother’s biggest challenges that she continues to advocate for – health insurance reform for her son and other children with autism.

During her son’s lifetime, the mother-of-two has pushed for autism insurance reform in two states – including Washington where a bill was named after Shayan – won a class action lawsuit regarding autism insurance against the state of Washington and, most recently, achieved Legislative funding for her nonprofit organization Washington Autism Alliance & Advocacy that will help advocate for families struggling with self-funded health insurance for autism.

But there is still a lot of work to do to ensure all children with autism get the health insurance they need to cover the intensive and costly behavior therapy for autism, she said.

Early struggles

Forough knew early on that Shayan was different than other kids.

By his first birthday, other kids in his play groups interacted with each other while Shayan stood alone.

“They really wanted to be around others and Shayan seemed to have his own agenda,” his mother said. “He wasn’t connecting to other children, he wasn’t connecting to people; he was connecting to objects.”

Shayan was mesmerized with moving objects, such as the breaking news on CNN that scrolled across the bottom of the television screen.

“He was becoming really, really detached from us,” Forough said. “That’s how we knew there was something going on, that he was different.”

Months later, his motor and communication skills regressed so by the time he was about 18 months old, he became completely silent. Shayan was diagnosed with autism shortly after his second birthday.

Forough got involved with autism advocacy in Shayan’s early years, at which time her family lived in Texas.

“I just couldn’t understand why children with disabilities couldn’t get developmental services paid for after they turned 3 years old,” she said. “Once they were referred to school districts, it seemed like the health care system and the developmental disabilities system just dropped off.”

Her family’s health was covered under her husband’s private insurance with his job at a university but his insurance would not cover behavior therapy for autism.

Known as Applied Behavior Analysis, the therapy often uses a reward system to help autistic children learn new behavioral and communication skills. At the age of 3, for example, Shayan learned to make a sound when he wanted a drink of water.

His mother’s early advocacy efforts afforded him private and state health insurance coverage by the time he was 4 years old.

“Shayan was the first child in [Texas] who had developmental services, speech therapy and behavior therapy, paid for through the state as well as private insurance,” Forough said. “It was huge but it took many years to set that up.”

Shayan’s Law

Just before Shayan was enrolled in the fourth grade, his family moved back to Washington to be near his mother’s family in Kirkland.

Forough had also heard about the University of Washington Autism Center, which supports families affected by autism spectrum disorders through exceptional clinical services and innovative scientific research.

“I just felt so ready to move out here and just be mom for a change because the amount of advocacy it had taken to set up those services for Shayan had just been mind-boggling,” she said. “I was confident that we would have exceptional services when we got here.”

But as soon as they moved to Kirkland, she realized that all of the potential services she thought Shayan would get for his autism had lost funding, including state services through the Developmental Disabilities Administration.

Her husband, who had taken a job with the University of Washington so the family could take advantage of the school’s Autism Center, also discovered that the school’s insurance didn’t cover autism treatment.

“It was really a surreal experience because we had all of these providers that were providing services, who were billing us and it’s really expensive and we found out insurance doesn’t cover it …,” said Forough. “So I started doing what I know best. I reached out to civic leaders and lawmakers and they couldn’t believe that the state of Washington was trailing the state of Texas.”

She also learned that Microsoft Corp. was the only employer in the state at the time that covered autism treatment.

She reached out to other families in the state, other advocacy organizations “and realized that the need for people with developmental disabilities was just enormous and there was not a single advocacy organization that was dedicated to people with autism for health care insurances. No one was taking on this subject.”

So she did.

She eventually launched Washington Autism Alliance & Advocacy, which has been instrumental in implementation of mental health parity, ensuring individuals with Autism Spectrum Disorders have access to evidence-based treatments for autism since 2010. The organization has been involved in lawsuits that have resulted in insurance and Medicaid benefits for 12,000 children statewide.

But she also pushed the state Legislature to pass a bill known as Shayan’s Law. The measure was initially introduced in 2008 and then re-introduced two more times. But ultimately it did not pass.

“It was a bill that would attempt to clarify mental health parity for individuals with autism and all that would mean is to really just clarify a law that had already passed in 2005 [mental health parity],” said Forough, noting that the mental health parity law had “arbitrary gateways set up that really exhaust families to give up. And all of the burden is falling onto the schools, the state and families.”

The Lake Washington School District serves about 460 autistic students, or nearly 2 percent of the student population, said Kathryn Reith, the district spokesperson.

Forough said there were local lawmakers who listened, including Reps. Roger Goodman and Larry Springer, as well as former Sen. Eric Oemig, who also sponsored the bill.

Meanwhile, her family struggled to pay for Shayan’s treatment out-of-pocket – approximately $1,000 per week. She said most families cannot afford to pay for intensive autism treatment, which can cost as much as $50,000 per year. And her son began to regress at home and school.

“It was frightening to watch this really happy, jolly kid develop debilitating self-injury and aggression, and property destruction,” she said.

Shayan’s behavior got to the point where he became eligible for the state-funded program Children’s Intensive in Home Behavior Supports when he was 13. He was the first child in Washington state who was placed in the program.

“I can’t begin to tell you what a difference it made in our lives for him to finally have access to intensive supports,” she said.

However, she noted there are thousands of children in the state who are in crisis, “but they don’t get to the level of crisis that [Shayan] was, so they wouldn’t qualify for this program.”

Insurance reform, Shayan’s Fund

This empowered Forough to help other children with autism, so she advocated for private insurance and Medicaid reform.

She appealed countless insurance denials through her insurance company – the Public Employees Benefits Board (PEBB) program for state employees – without success. So she employed the help of the Office of Insurance Commissioner, which conducted an independent review of her insurance claims for Shayan’s behavior therapy.

The reviewer found that his treatment was medically necessary and he told the insurance company to reverse the denials.

But the review backfired.

PEBB eventually changed its internal policy to explicitly exclude treatment for kids with autism, even if it was medically necessary, said Forough. So she contacted an attorney and filed a class action lawsuit in 2010.

“I took reams and reams of bills and denials from multiple insurance companies and they studied them and they asked me if I would be interested in [Shayan] being named a plaintiff in a class action lawsuit against the state of Washington,” she said.

During the case’s first hearing, the judge told the state insurance company that “they can’t exclude an entire category of treatment for an entire class of patients,” Forough said.

She got more families to move forward as plaintiffs in other cases and, in all, there were five class action lawsuits filed involving families with autistic children.

They reached a settlement with the state called Shayan’s Settlement, which stipulates treatment for individuals with autism and other developmental disabilities that are in the DSM (Diagnostic and Statistical Manual for mental disorders) will get covered by insurance as long as it’s provided by a licensed provider.

In her quest for Medicaid reform, her organization was also involved in a subsequent lawsuit against the Washington State Healthcare Authority over coverage for Medicaid-eligible children. They reached a settlement for 9,100 children who would potentially be eligible to have assessments, diagnosis and treatment for autism coverage.

The state Legislature this year also provided a $270,000 grant – also known as Shayan’s Fund – for her organization to work with families with autistic children who struggle for treatment coverage through self-funded insurance companies.

Forough encourages families seeking health-insurance advocacy to get help through the Washington Autism Alliance & Advocacy.

But she also hopes to someday see an end to her advocacy.

“I would like to retire at some point. I’ve always said I’m working to put us out of business. My hope and dream is that we don’t have to continue to do this, that at some point there’s well-established clinical practice guidelines for individuals with autism, the same way there is for diabetes, the same why that there is for migraines,” she said. “A child should be able to be evaluated, be assessed, get a treatment plan and for that treatment to be covered by insurance [without] this un-ending hoop that families and providers have to jump through.”

More information

For more information about the Washington Autism Alliance & Advocacy, visit www.washingtonautismadvocacy.org and click on the “find an advocate” tab.