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Local kids may finally get a break

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Proposed bill would provide insurance coverage for autistic children
From the outside, Dominic Vega looks like an average 4-year-old boy. He has big, chipmunk cheeks, a dazzling smile and he loves anything that has to do with cars.

Unlike other children, however, Dominic doesn't talk or play with his cars like one would expect. Instead of making engine sounds and pretending that he is driving in the Grand Prix in his two-inch convertible, he simply rolls it around, looking at the tires and inspecting it for flaws. It is a common trait among children with autism; the disorder tends to make their minds very literal. Dominic was diagnosed about two years ago.

“I got emotional because I didn't really know anything about autism,” said Diana Vega, Dominic's mother and a Cedar Park resident. “The only experience I had was with [the movie] ‘Rain Man' and he was in an institution. I thought, ‘Oh my God.'”

Then came the hard part. Vega found out that according to her insurance company, autism is a mental disorder and therefore his treatment, which can cost $600 per week, would not be covered by her policy. To get her insurance to cover just four hours per week of speech therapy, Dominic's pediatrician had to write his diagnosis as static encephalopathy, a type of brain damage most often associated with fetal alcohol syndrome.

The Texas Senate is currently debating a bill, Senate Bill 419, that would help families like the Vegas by legally defining autism spectrum disorder (ASD) as a neurobiological disorder. ASD includes autism, Asperger's syndrome and other pervasive developmental disorders. The language of SB 419 would require insurance companies to cover scientifically proven treatments recommended by a pediatrician for children between the ages of 3 and 5.

“With ASD rates growing between 10 and 17 percent per year, we as a state and a nation must do everything in our ability to offset the impact, starting by ensuring that young children get the services they need,” said Sen. Eddie Lucio Jr., who introduced the bill, in a press release. “By refusing key services to children with autism, we are condemning them and their families to a lifetime of unnecessary hardship and social isolation.”

The sentiment rings true for Jennifer Maw, a Cedar Park resident whose fourth child Alexander (Xander for short) was diagnosed with autism about a year ago. She said that Xander would jump off of things onto his knees because he did not feel the pain, and would throw horrible fits because he could not communicate.

“This wasn't the normal terrible twos,” she said. “I know what those look like. This was scary.”

Until he turned 3, Maw was able to get speech therapy through the Early Childhood Intervention program. She was then referred to the Bluebonnet Trails Mental Health Mental Retardation Center, which was starting an autism program. The program provided 20 hours of one-on-one applied behavioral analysis (ABA) therapy per week.

ABA therapy works through repetition and positive reinforcement to teach language and social skills for a wide range of people. It is also the only treatment that is scientifically proven to work across the entire spectrum of autistic disorders. Working with a certified ABA teacher can cost upwards of $100 per hour.

Megan Dare, who has been working with autistic children for almost five years, said that, despite its bad reputation in the past, ABA can change the course of a child's life. She said that years ago, the therapy would consist of nothing but sitting a child at a desk and drilling him or her on certain words and behaviors, but it has evolved and is now something that is fun for the kids.

“We are not throwing out some new-age treatment. It has 20 years of research behind it,” she said. “We are teaching them how to learn.”

Maw said that the therapy combined with a gluten- and ketone-free diet improved Xander's behavior tremendously. He started to learn sign language, his tantrums were significantly reduced, and she can now communicate with him in a way that he understands.

“It wasn't until six months ago that he called me mom,” she said. “Two months ago, he said ‘I love you.'” She said that it made her so happy that she broke into tears.

Vega said that the difference in Dominic was like night and day. “Now he knows how to give me hugs and kisses. He knows how to call me mom by signing. He used to have a meltdown and scream. Now we know how to handle that,” she said.

Then they were told that state funding for Bluebonnet Trails was cut, and the autism program was stopped. The Vegas were given a $2,500 grant to help continue Dominic's therapy, but for even 10 hours a week, they estimate that it will cost them an additional $7,000 out of pocket.

“Only rich people can afford ABA,” said Vega. “For a family with only one income, it would be impossible.”

For Maw, it is impossible. She was forced to stop Xander's treatment entirely, saying that the overwhelming cost would break the family financially.

“I really don't know what we are going to do,” she said. “I suppose we will do what any family does and that's just go on. There really isn't another option.”

Those in favor of SB 419 say that it will give families like the Maws options to treat their children instead of deferring the costs to years from now when the children will be institutionalized.

“It's a great bill. The state of Texas doesn't do much to help these parents out,” said Dare. “To get any bill for autism would be impressive.”

Not everybody thinks that the bill is a good thing, however. Shelton Green, governmental affairs manager for the Texas Association of Business, said that any government mandate on insurance drives up the cost of premiums and that insurance costs have been increasing by double-digit percentages almost every year for a decade.

“Employers are buckling under the costs of premiums already,” he said, adding that a further increase would cause many small businesses to pass the extra charges on to their employees or stop offering benefits altogether.

Costs for the bill are estimated at $180,000 per child, and there is no way to tell how that would translate to insurance premiums. Proponents of the bill say that it is worth it, considering that if the disorder is left untreated, the lifetime cost to the state for the care of an autistic child could be $4 million.

“The problem is money,” said Vega. “No one wants to pay. It's expensive.”

Added Dare, “We either have to pay for this now or in 40 years when they are in an institution and their parents are dead.”

Maw said that with therapy, Xander could lead a normal life and hold down a job someday, but without it he will end up in a state-funded institution.

“If he is flipping burgers at McDonald's for the rest of his life, at least he is bringing in an income and not being a leech on the system,” she said.

As for Dominic, Vega said that she and her husband will do what it takes to continue his therapy, likening the cost to that of college tuition.

“I feel that putting money aside for his therapy is investing in his future,” she said. “Like paying for college now instead of later.”

SB 419 is currently waiting in committee, pending approval of a fiscal note by the Senate Finance Committee. The approval of funding is required before any bill can be passed out of committee. Sen. Lucio is working to have an exception made, but the bill's future is uncertain. Dare asked that people write their state senator to show support.

“There is no other way for families to afford [treatment]; there is no state funding,” she said. “Should the state pay for it? Should insurance pay for it? My answer is yes.”

email: amy@hillcountrynews.com

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