The Autism Gap: The fight for insurance | Families
ATLANTA -- Eight year old Ava Bullard is playing with her sisters, riding their bikes on their long country driveway. It is a simple act that defies those who said she would never talk, those who said she wouldn't function in the real world.
Ava was not a typical baby, or toddler.
Her mother Anna says, "You couldn't interact with her."
Ava did not play with toys. Did not speak. Could not dress herself. Did not interact with her parents or sisters. Slept two hours a night. She was in her own world.
Anna says, "It's like she looked straight through me. She would just...it's like you weren't there, if you were in the room with her."
Anna Bullard took Ava from doctor to doctor for months. One doctor told the family Ava was 'just weird.'
Finally, when Ava was two and a half years old -- a diagnosis of autism.
Anna remembers asking the doctor, "What do I do? Where do I go to get Ava treatment? Where do I get these specialized treatments that I read about on the internet? And that's when the developmental pediatrician looked at me and said, 'That's the cadillac version. And you'll never be able to afford it.'"
The doctor told Anna to put Ava in special education in school, that she would remain there her entire life, and that she likely would never speak.
"It was the most heartless thing. It was just cruel." And to the doctor she wanted to say, "And you don't know me because I will do anything I will sell my house, I will do whatever it takes."
Before her diagnosis, insurance covered Ava's speech therapy. After diagnosis, "They said, autism is excluded coverage. Your child can't get anything."
Despite the 'no's' from the doctor and her own insurance, the Bullards pushed forward, giving Ava 40 hours a week of therapy called applied behavioral analysis, ABA -- plus speech and other therapies. They borrowed money from their families, spending more than 45 thousand dollars a year. It worked. Ava found her voice.
She came out of herself -- into her family's world.
"I came into the door where the therapist had Ava and she spontaneously said 'mama.' There aren't words for that. It was just the best moment in my life, really."
Today, five and a half years later, Ava is in a mainstream 3rd grade classroom, a top student. She still has autism. But she is thriving.
For Anna Bullard, it isn't enough that Ava is okay. She has taken her fight for the 30,000 children with autism in Georgia to the capitol.
House bill 309 will require state regulated health plans to cover therapies that are medically proven to help children with autism.
Anna and Judith Ursitti, the director of state government affairs for the national non profit Autism Speaks work the lawmakers one by one.
Autism Speaks is armed with hard numbers. 32 states have passed legislation to cover autism. The military now covers autism treatment as does the federal government for all its employees. Data from state employees in South Carolina , Illinois, Louisiana, Florida and Arizona shows the cost is about 32 cents per person, per month-- less than the price of a stamp. But Georgia lawmakers shot down a similar bill three years ago. Lobbyists fought against the bill and lawmakers said they didn't want the government mandating them to pay more money for insurance.
"We're living in the dark ages here." Doctor Alan Weintraub is one of just seven developmental pediatricians in Georgia. Parents wait months to see him, to get the diagnosis of autism.
"You can take this child like looking like he has severe autism to fitting into the world. it would make a huge incredible difference. If the families can afford the therapies early on, it's the biggest turning point."
The autism diagnosis highlights a class divide. Families with money can give their children all the therapies. The rest, can't.
"You're talking about someone's salary to pay for that weekly intervention. If we can get that covered in a more appropriate fashion, you're taking away that class warfare. You're taking away that inequity."
Weintraubs says it's pay now or later. The Harvard School of Public Health estimates the cost of caring for someone with autism over their lifetime is $3.2 million dollars.
Ava is the poster child for what is possible with early intervention -- a future.
Sitting in a chair in her living room, her legs swinging above the floor, she smiles and says, "I want to be a fashion designer and I have a sewing machine in my room."
Anna Bullard is fighting to help other children like her daughter, find their voice.
"I was brought up to believe that when something is right and fair you fight for it. I just feel like Georgia's not going to let me down this year."