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Kirkwood Mom Lends Strong Voice to Autism Awareness

Jill Puertas says Missouri's new autism insurance law is a good start, but more work remains to be done before all children are covered.

On Jan. 1, Missouri's new autism insurance law takes effect. It makes certain health insurance companies pay for certain autism-related therapies for certain kids. But amidst this list of "certains" lies considerable uncertainty. Not all insurance policies are subject to the law, and, and as a result, not all children with autism are covered. 

Even so, for Jill Puertas of Kirkwood, it's a start. "There's still lots of work to be done," said Puertas, whose son Jude, 8, has autism.

Puertas is a longtime Kirkwood resident and has a family-law practice in Webster Groves. She typifies a new generation of parents of children with autism, Web saavy individuals, hungry for information. These parents enroll their children in clinical studies and do whatever it takes to find even the slightest glimmer of hope for their kids. 

Perhaps Missouri's new law will offer more than a glimmer of hope for Puertas and parents like her. 

The mother is in mid-sentence, ready to make an important point about the new autism legislation, when the phone rings and interrupts her train of thought. The call is from Jude's school.

For most parents, a call from their child's teacher in the middle of the day would trigger alarm bells, but Puertas explains that these calls are common for parents of children with autism.

"Usually, it has something to do with a behavior problem, nothing too serious," she said. For years, each day has been like this. Her son was diagnosed with autism when he was one year old.

"We literally have to live one hour at a time. You just never know what the day is going to hold. It is a lot to juggle," Puertas said in a tone of exasperation. 

According to the National Institutes of Health, the incidence of autism is estimated between 30 and 60 cases per 10,000 children. Autism advocates cite far more dire statistics, such as one in 90 kids, or, even worse, one in 58 boys will be diagnosed. 

For seven years now, increasing autism awareness has been Puertas' mission.

Spend a few minutes talking to the parent of a child with autism, and you'll find yourself immersed in a world with a language all its own, a mix of medical jargon, euphemisms and acronyms. 

They talk of such things as being "on the spectrum," which refers to a range of psychological disorders that contribute to abnormal social and communication skills. 

Autism is at the extreme end of the spectrum, which also contains such conditions as Asperger's and Rett syndromes. 

The terminology can prove bewildering to the uninitiated. Therein lies the challenge Puertas and other autism advocates face in educating the general public. 

If people can't define it, they can't understand it. And, if they can't understand it, they have a difficult time paying attention to it. On the other hand, efforts to reduce autism to a vest-pocket, 20-second "elevator speech" definition runs the risk of oversimplifying a serious and complicated condition.

The old way of describing someone with autism as being "lost inside themselves" has proved inadequate and perhaps a bit offensive. Not everyone on the autism spectrum is "lost." Each person has varying levels of communication and socialization ability.

Even something as basic as the name itself can lead the unknowing into a semantic swamp. The first rule of thumb: Don't say "autistic." The term hasn't been acceptable in more than a decade. So the sentence, "Billy is an autistic child" should be reworked to, "Billy is a child with autism." 

Then there's the touchy subject of labeling autism a "disease." It isn't. It is a disorder. But, unfortunately, the term "disorder" lacks the fundraising gravitas and overall sense of loathing the word "disease" conveys. As such, autism often gets set off to the side, caught in a medical no-man's-land, somewhere between disease and disorder, psychology and genetics.

For insurance companies that hold the power of the purse to pay for treatment, this uncertain characterization has left plenty of room to deny coverage for autism-related therapy. It's too expensive, it has uncertain outcomes, and it would drive up insurance costs for everyone, or so the argument goes. 

That argument riles Missouri Senator Eric Schmitt, R, Glendale. "Of the top 12 neural/biological conditions, there's only one excluded from coverage and that's autism," said Schmitt. Schmitt's 6-year-old son has autism and is unable to communicate verbally. "It is being discriminated against. Even if you are not affected as a parent, you know somebody who is affected."

Schmitt revealed his son's condition to his colleagues in an emotional speech on the floor of the Missouri Senate. 

Schmitt admits that he struggled with the decision to "come out publicly" as the father of a child with autism. "How much of yourself do you really want to put out there? But I didn't feel I was being honest if I didn't.

"The idea of a citizen legislature is for people to bring all their experiences there, and I made a decision to share what it's like everyday. Unless you live it, it is hard to understand what it means every minute of every hour, of every day of every month, of every year after year for the rest of his life."

Schmitt's impassioned speech helped generate strong feelings in the legislature earlier this year, when lawmakers overwhelmingly passed HB 1311, sponsored by Rep. Dwight Scharnhorst, R, Valley Park. Scharnhorst, whose grandson has autism, helped craft Missouri's new so-called "Autism Law."

The law will require certain group health insurance companies operating in Missouri to cover autism-related therapies for children up to age 19. 

Most large group policies will be exempt because they are overseen by the federal government, which does not mandate autism coverage.

Smaller company policies and most all state based and school-district-employee-group health policies, however, will fall under the new mandate.  

Puertas admits there's a lot of gray area as to who gets covered for autism therapy and who doesn't. But, she says, it's a good start.

"This is long overdue," she said. "It has been needed for a long, long time. People are struggling to pay for this needed therapy."

Ironically, even as Puertas lent her strong voice to support the legislation in Jefferson City, she will not benefit from the new law. Her family's health insurance plan does not fall under the new Missouri mandate.

That means she will continue to pay out-of-pocket for whatever autism therapies her son does not receive in school.

"Jude has therapy seven days a week, from 4:30 to 6:30 every night," Puertas said. "You can imagine how that stacks up over time."

A therapist trained in the gold standard of autism therapies, ABA  (applied behavioral analysis) typically earns about $12 an hour, according to Puertas. The math works out to approximately $700 a month, in addition to other types of therapy for speech and vocation.

If the new Missouri law applied to her particular health plan, Jude's ABA therapy would be covered starting the Jan.1. For now, she will continue paying and hope enough states approve similar legislation to reach a tipping point, triggering calls for a federal law.

The trend is moving in that direction, as Missouri is on the brink of joining 22 other states with laws mandating some degree of insurance coverage for autism therapy.

Meanwhile, Jude continues his daily therapy. The 8 year old sits at a work table, tailored to his height. His therapist spreads out a deck of colored cards. When prompted to "give blue," Jude reacts.  He reaches for the corresponding blue card and gives it to his therapist.

To the casual observer, this ABA exercise would seem rudimentary, but Puertas is convinced it is helping her son. He did not get to the point of recognizing card colors and responding to verbal clues without great effort.

"Without that structured learning, I'm convinced we'd never know what's going on inside his mind," Puertas said. "There are tons of kids who are completely non-verbal. They can't tell you what they want. You can imagine being locked inside your head. You can't signal what you want. You get so frustrated, and that's when the behavior issues arise."

With intensive, repetitive ABA therapy, Jude is learning to express himself.  Compared to other children in similar circumstances, he is a fortunate both that his family has the resources to pay for such therapy and that he was diagnosed at such an early age.

Autism experts agree the earlier a child is diagnosed and therapy begins, the better chance a child has to succeed.

"I knew at eight months," Puertas said. "I had two children very close together, and I remembered those baby moments. Jude was not doing those things other babies do, so I went online, did some research, and sure enough, he met all the criteria."

In Jude's case, the autism criteria that she refers to was a lack of eye contact, little or no response to verbal cues, no cooing and not sitting up.

"I took him to the doctor, and said Jude is not doing this or that and the doctor, at first, wanted to take a wait-and-see approach," Puertas said. "Finally I just came out and said it. Jude is on the autism spectrum. I can't wait until he's a year old. I need your diagnosis!  At age one, I did finally get it."

From that moment on, she has been a realist. There is no cure for autism, only treatment. The treatment is both expensive and ongoing. Gains made one day will soon disappear if therapy does not continue. For the parent of a child with autism, there is little rest.

Nor is there rest in Puertas' continuing efforts to advocate for and educate about autism. Her next challenge is helping organize a statewide campaign to approach insurance companies presently exempt from Missouri's new autism law.

The strategy is to appeal to companies' better nature, their sense of decency and humanity, and persuade them to voluntarily opt-in and start paying for autism therapy.

Puertas admits it's a tough sell, but the law doesn't say they cannot cover autism therapy. It just doesn't force them to. That's the small opening, the crack of light seeping in the closed door, on which Puertas is focused.

"We've already approached Anheuser Busch/InBev, and we have others in mind," Puertas said. "It's going to take a big grassroots initiative to push the envelope."

It will not be easy, but easy is not a word in Puertas' vocabulary.

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