Ava’s Law Rally to stress autism insurance reform
by Marie Nesmith
Nov 05, 2013 | 3445 views | 0 0 comments | 160 160 recommendations | email to a friend | print
With the Ava’s Law Rally set for Thursday, autism insurance reform will take center stage, with information provided about House Bill 309 and how to advocate for its passage in 2014.

Starting at 7 p.m., the event will be held in Cartersville Medical Center’s Classroom No. 1 and feature Anna Bullard, Ava’s mother, who will address the topic of securing insurance coverage for autism-related therapies and how autistic youth can reach their potential. More than 30 other states already have reformed their autism-related insurance coverage.

Endorsed by Autism Speaks and “sponsored by Rep. Ben Harbin (R-Evans), the bill (HB.309), would require state-regulated health plans to cover autism-related therapies,” according to www.autismspeaks.org. “The bill is named after Ava Bullard, whose mother Anna Bullard of Lyons, posted a YouTube video describing her family’s experience raising a child with autism.

“... Ava’s Law would require up to $50,000 a year in coverage for behavior health treatment which is routinely denied by health insurers, even though evidence-based treatments have been endorsed by the American Academy of Pediatrics and the U.S. Surgeon General. Also it would require coverage for autism-related speech, occupational and physical therapy as well as pharmacy, psychological and psychiatric care.”

Autism — a complex developmental disability — generally materializes by a child’s third birthday and affects their ability to communicate. Some symptoms of an autism spectrum disorder, which are posted on Autism in Bartow’s website, www.autisminbartow.org, are opposition to change, difficulty interacting with others, trouble making eye contact and attachment to objects. The U.S. Centers for Disease Control and Prevention’s statistics reveal 1 in 88 U.S. children — 1 in 54 boys and 1 in 252 girls — have been diagnosed with an autism spectrum disorder.

“The biggest thing we want people to know is that this will require insurance companies to cover evidenced-based treatment for autism,” Bullard said. “Right now the big fight that we’re having is with the insurance companies saying it’s going to cost too much, when really we know from 34 states that it costs less than a dollar per member per month.

“So we’re trying to get the word out to tell people to advocate for these families who have children with autism and there is a treatment, it’s just they can’t get it,” she said, referring to Applied Behavior Analysis treatment.

For Sandi Marcus, a member of Autism in Bartow, the passage of Ava’s Law is important for the parents of children who are on the autistic spectrum as well as the community’s social infrastructure. Since the Cartersville resident’s twin 10-year-old grandsons, who were diagnosed with autism about age 2, started ABA therapy at 5, her family has seen a vast improvement in their behaviors.

“It means better treatments and therapies for their children,” Marcus said, referring to Ava’s Law. “For my family in particular, it has placed a huge financial burden on us. The cost of ABA therapy, which is Applied Behavior Analysis, which is the only scientifically proven therapy to really help these children [is] very expensive and they need a lot of ABA hours. It’s mainly done one-on-one. So the average cost can be anywhere from $40 to $80 per hour. Like for my grandsons, it was recommended that they receive 25 to 30 hours per week. Obviously, most people aren’t able to do that, our family wasn’t able to do that. We did the best that we could, and it really put a strain on our family.

“I know of other families that they feed their children, but the adults go without food for a couple of days in order to come up with funds. ... Considering where they were at before we started ABA therapy, it is 180 degrees as far as the improvements that we have seen. They still have a lot of work to do. They still function below grade level, a great deal below their grade level. It’s an ongoing process, but our goal is to try to help them live an independent life as much as possible as they go forward.”

Echoing Marcus’ comments, Bullard attributes the high cost of ABA treatment to its one-on-one nature, which is specialized and individualized to each child.

“[Autism is] a medical condition,” Bullard said. “It’s a neurobiological disorder, so it’s a very intensive treatment, but over 50 percent of kids that receive it intensively early — between 2 and 5 years old — completely are indistinguishable ... meaning in laymen’s terms if they go to first grade and nobody knows they have autism.

“They’re mainstream. They are in regular-ed. They have friends, and that’s what you can have if you get treatment for a child early on. So as a parent who has a child who was very severe and who is no longer severe at all, I say, ‘What person doesn’t want to do that?’ What person would say, ‘I’m sorry. We don’t think a child deserves that?’”