Autism Treatment Remains Out of Reach for Many Families

Autism Treatment Remains Out of Reach for Many Families

Date: March 10, 2015
Author: Jill Nolin, CNHI State Reporter
Source: The Moultrie Observer

Identifying autism as the cause of her 2-year-old daughter’s troubling silence was the simple part for Anna Bullard. Finding a service provider and the money to pay for treatment proved difficult.

The Bullards are on the health plan for state workers and teachers, which didn’t include coverage for autism treatment until this year. With help from family, they paid out of pocket for Ava’s treatment. Their bills tallied up to $25,000 in the first year.

That was back in 2008. Anna Bullard, who lives in Lyons, has since become the public face of a campaign to sway the General Assembly to force employers to cover autism treatments such as applied behavior analysis therapy.

A bill known as Ava’s Law would only apply to Georgians with private insurance, or about 20 percent of the state’s 10 million residents.

“If you have a child with autism and they’re crying, you have no clue why. If someone can help you figure that out, that’s huge,” said Bullard, who is now the director of community outreach and advocacy with the Early Autism Project. “I think every parent should be able to give their children the opportunity to meet their full potential.”

While many at the Capitol share that sentiment, opinions vary on how to do that without inflicting harm on the business community. The bill found unanimous support in the Senate but is already facing tough questions in the House.

Sen. Charlie Bethel, R-Dalton, who is sponsoring the measure, says he understands the hesitation.

“There is a natural resistance that I think those of us on the conservative side of political thought are going to have when you say we’re going to require something new in the economy, that we’re going to compel anything,” said Bethel, who chairs the Senate’s Insurance and Labor Committee.

Bethel believes he will win over reluctant legislators with data showing the low costs of covering treatment in other states and the impact of early intervention on children with autism.

“Rather than being a perpetual consumer of public resources, they’re contributors. That math really starts to add up favorably for society,” he said.

Debate over the insurance mandate comes as the state lends its voice to a challenge to the Affordable Care Act that is now before the U.S. Supreme Court. Bullard said this tension is why advocates are not pushing to add coverage to Georgia’s health insurance exchange.

“Even though you are obviously leaving out a group of people, we felt like politically it was impossible to do that in Georgia right now,” he said.

The bill also cannot touch large employers with self-insured plans, which are regulated by federal government.

Despite its limited reach, it is still expected to affect about two million people, Bullard said.

The aid would come too late for Dawson Joiner, a kindergartener in Valdosta. Any child older than 6 would not be covered under the law, which attempts to catch children before they enter school and requires employers to offer insurance coverage up to $35,000 of the applied behavior analysis therapy.

Diagnosed with autism at age 2 1/2, Dawson received as much applied behavior therapy as his parents could finance through $9,000 grants available through non-profit groups.

The treatment typically involves one-on-one time with a therapist and uses repetition backed with positive reinforcement to help children learn new skills and concepts. For Dawson, it supplemented his usual speech and occupational therapies and focused more on specific behaviors like making eye contact.

“It’s not fair for parents to have to pick and choose what services they can afford for their child,” said his mother, Jennifer Joiner, who is a speech therapist. “I know something is out there, and I wasn’t even able to give my child a chance to see how good it works for him.”

For Ava Bullard, the therapy brought immediate results, her mother said.

Ava, who received 30 hours of specialized therapy her first year of treatment, is now a fifth-grader at Lyons Upper Elementary School. She has friends and performs at grade level. The school maintains an Individualized Education Program for her, mainly to ensure that she stays on track.

Autism is a group of brain development disorders that affects 1 in 68 children — a number that has increased significantly over time. It usually manifests itself as difficulty in social interaction, communication or in performing repetitive tasks.

Without intervention, children with autism disorders eventually show up untreated at public schools, which can spend as much as $14,000 to accommodate them, Bethel said. Those children often grow up to become adults in need of social services, he said.

But House Republicans question whether lawmakers, in hoping to help those children, are unfairly shifting the burden to businesses. Additional costs to the affected insurance plans would be about 26 cents per person every month, Bethel said.

The average cost per plan in other states is 33 cents a month. At least 37 states have mandated coverage for the disorder.

Those numbers may sound trivial, but they can add up quickly, said Rep. Mike Cheokas, R-Americus.

“Will the benefit equal the cost? That’s what we’re going to have to weight out,” said Cheokas, who serves on the House Insurance Committee.

The Georgia plan does not apply to businesses with fewer than 10 employees. It also exempts employers if the cost related to the coverage exceeds more than 1 percent of premiums. Bethel refers to the latter as the “circuit breaker” in the legislation.

The narrow focus and inability to help all Georgians have also drawn criticisms from those who see the bill as exclusionary. Bethel acknowledged those concerns but said the focus needs to be on finding a solution soon.

“This isn’t the first step, the last step. It’s just the next step,” he said. “It’s just another major move in Georgia’s border-to-border, all-hands-on-deck response to a public heath crisis that really just sort of unfolding in front us.”


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